Parent-led weight restoration is a key intervention of family-based treatment, an empirically supported treatment for adolescent anorexia. Successful outcomes in family-based treatment depend almost entirely on parental action, yet current understandings of this intervention are primarily informed by professional theory and expert perspectives. Comparatively little is known about parents’ goals and actions while implementing the treatment, despite goal-directed action being an explicit framework of family-based treatment. This study seeks to investigate parents’ involvement in weight restoration from the perspective of the goal-directed actions they construct and engage in themselves and with others. This study focuses on the phenomenon of parent-led weight restoration as a project and addresses the following research question: “How do parents participate in the weight restoration of their adolescent as the adolescent recovers from anorexia nervosa?”.This multicase study used the action project method and conceptual framework of contextual action theory to examine four cases of five parents engaged in actions to help their adolescent regain weight and recover from anorexia. Data were collected using multi-part interviews and analyzed according to the action project method and the multicase approach.Parents’ weight restoration projects were identified and grouped based on three common a themes. The primary theme, progressing toward health and well-being, was supported by three key processes: maintaining a holistic focus, trusting, and monitoring progress. Two secondary themes captured actions that were integral to the parents’ projects, but with less prominence. Secondary themes were creating capacity, which was supported by three processes , and coordinating and negotiating partnerships. The socio-cultural valuing of the thin ideal emerged as a unique process salient in one case. This study presents a goal-directed and contextual perspective on how parents translated the principles of family-based treatment into their daily lives. It joins a small but growing body of work concerned with generating new understandings and frameworks for practitioners and researchers to enhance the effectiveness of family-based treatment in community settings. Family-based treatment is one of the leading treatments for helping adolescents recover from anorexia. Parents play an essential role in this treatment, yet little is known about how parents translate the principles of FBT into day-to-day life. We studied four cases of five parents while they were using FBT to help their adolescent recover from anorexia. Overall, we found these parents’ actions were guided by three common and overarching goals. First, parents were focused on progressing toward health and well-being, using processes like keeping a focus on adolescent development, trusting, and monitoring progress. Second, parents were focused on creating psychological, emotional, and financial capacity to be successful in FBT, where many of their actions were shaped and constrained by the resources available to them. Finally, parents were focused on negotiating and coordinating partnerships with their co-parent (primarily), as well as others, to stay united in their efforts. Family-Based Treatment , FBT is Under conditions of high internal validity, up to 40% of adolescents treated with FBT achieve favorable outcomes on percentage of ideal body weight and eating disorder symptom scales . FurtherRecommendations for improving outcomes for families have focused on improving practitioner fidelity to the manual , such asThe success of FBT rests almost entirely on parental action, yet the actions of parents and how they engage with FBT is most often captured indirectly through professional perceptions of parents’ behaviors –25, survA variety of action theorists –33 note The purpose of this study is to investigate parents’ involvement in weight restoration from the perspective of the goal-directed actions they construct and engage in themselves and with others. This study focuses on the phenomenon of parent-led weight restoration as a project and addresses the following research question: “How do parents participate in the weight restoration of their adolescent as the adolescent recovers from anorexia nervosa?”.The qualitative action-project method , 38 was Mage = 14.5; SD = 1.73) were recruited for this study in Vancouver, Canada. The original data set included six parents, but one case was removed. While this parent was active in supporting their adolescent’s weight regain, the treatment team had made many departures from FBT, including asking the parent to leave appointment scheduling to the adolescent. Table Five parent participants  of 4 adolescents between 13 and 16 years of age (n = 3) and Western European countries (n = 2). Four parents identified as Caucasian, one identified as Indigenous. At the first and final data gathering sessions, each parent was paid an honorarium for their participation.Two mothers (Cases 2 & 4) were heads of single-parent homes with shared custody of their adolescent, one mother (Case 1) was married, but her partner declined to participate in the study, and the parental dyad (Case 3) were married. Participants were born in Canada (n = 3); a university research space (n = 1), and a community recreation centre (n = 1). For consistency, the first author (Socholotiuk), a doctoral student with 5 years experience as an adolescent eating disorders clinician, was involved in the data collection and analysis for all four cases. Two associate professors/psychologists and two doctoral students in counseling psychology assisted with the data collection, and the research team involved in the analysis included the first and second author and two masters’ students in counseling psychology. All members of the research team were familiar with the philosophical underpinnings of method, and all data from the data gathering sessions were recorded and transcribed verbatim.Data collection and analysis unfolded in four distinct phases  and two researchers. The warm-up conversation served various purposes, including establishing rapport, learning about each parent’s experience with weight restoration, and helping them to identify topics pertinent to weight restoration and their engagement with it. The warm-up conversation concluded by inviting parents to select one of the topics to discuss at greater length in the joint conversation.The average duration of the warm-up conversation, as well as subsequent data gathering sessions, is presented in Table For the joint conversation in Case 3, the researchers left the room, allowing the parents to self-direct the conversation. For cases with an individual parent participant, a researcher served as the parent’s conversation partner. The procedures of the action-project method are designed to produce rich description of dyadic action but are flexible to allow for adaptations provided the research problem is framed from the perspective of goal-directed action and action is the unit of analysis . For theThe final step of the first data gathering session was the self-confrontation procedure. Each parent was paired with a researcher to review and reflect on the playback of the video-recorded joint conversation they just completed. For Case 3, each parent separately completed the self-confrontation with a different a researcher; for cases with individual parent participants, the researcher not involved in the joint conversation conducted the video play-back. The recording was paused at regular but meaningful intervals for parents to describe their cognitions and emotions during the joint conversation, with a general guideline of stopping at one-minute intervals; parents were invited to pause the video at other times if they had something else to share.Data analysis followed the steps outlined in Young et al. . All datThe purpose of the first analysis was to describe the actions of the parents during their joint conversation and infer their ongoing weight restoration project as manifest in the action. This analysis involved taking an iterative “bottom-up” and “top-down” perspective on the data, informed by contextual action theory. Working together, minute-by-minute, researchers read the transcriptions and re-watched the corresponding joint conversation for a three-level analysis of each minute. The first level of analysis was a bottom-up perspective that involved coding the joint conversation for specific verbal behaviours . We used a list of codes that had been developed sequentially and used in previous studies focusing on the verbal behavior of participants using this method , 40, 41;The two researchers involved in the analysis summarized the findings into a written narrative. For Cases 1, 2 and 4, one narrative was prepared for each parent. For Case 3, three written narratives were prepared: one each for the mother and father, and a third reflecting their joint action. In all cases, the narratives concluded with a tentatively identified weight restoration project. The weight restoration project was a summary statement representing the parent’s individual and joint goal-directed weight restoration actions.Approximately 2 months after the first data gathering session, the written narrative and tentative weight restoration projects were shared with each participant. The purpose of this second interview was to elicit parent feedback as to whether the identified project fit their subjective experience of weight restoration, and to discuss their progress with weight restoration since the first meeting. The first author reviewed the narrative with each parent individually, and this interview was audio-recorded and transcribed as an additional source of data.The final analysis was guided by Stake’s  multicasThe within-case analysis was guided by the verified projects from the first analysis and sought to describe parents’ individual and joint actions while engaged in those projects. A final case summary was prepared, where the aim was to describe the complexity of the weight restoration project as it was located in its own situation. Each individual case analysis was concluded by several assertions concerning what was found to be important or salient about the parent’s actions in each case.To some extent, the cross-case analysis took place concurrent to the individual case analysis; however, full attention was not given to the cross-case analysis until the within-case analysis was completed. First, a comparison was made of how each case answered the research question. Second, significant similarities and distinctions between the weight restoration actions and processes between cases were identified, supported by quotations from the data set. Finally, key assertions were made based on the researchers’ understanding of the important findings across cases.Several procedures were applied to address trustworthiness in this study , 44. TheThe aim of this study was to describe the actions of parents as they participated in weight restoration for their adolescent. All parents shared the broad intentional framework of helping their adolescent recover weight and eliminate eating disorder behaviors, but weight restoration projects manifested themselves in unique ways in each family. Four weight restoration projects were identified in the analysis, each representing the complexity and challenges of the family in which it was enacted  short-term goals related to weight restoration, and (b) longer-term goals related to the adolescent’s psychological well-being. In Cases 1 and 2, weight restoration goals were foregrounded, while in Cases 3 and 4, where the adolescent was closer to reaching their minimum weight, well-being goals were more prominent. The processes by which parents progressed toward health and well-being included maintaining a holistic focus, trusting, and monitoring progress.She comes home from school, and goes “Mom, Dad did this at breakfast’, or you know, “I only had 5 minutes for breakfast, and we almost missed the bus’. And that’s the debate. I’ve talked to him. I’ve talked to her about-, you know, ‘You need to say that to your dad...you need to talk to your dad and tell him’. …But I still don’t know how much, and in what way, to support her. Because if I help her with it, am I teaching her? Or am I just doing it for her and then she doesn’t have to do it? And that’s-, I’m still having trouble with that, you know, as a parent.Maintaining a holistic focus on the adolescent and their development was a central process by which parents progressed toward health and well-being. All parents accepted the temporary interruption of developmental goals as a step in the service of weight restoration. Parents were motivated to do so by the treatment framework, which views anorexia as a medical crisis, but also by believing the hardship would foster resilience and work in favor of overall development . However, an undulating quality of care and attention to weight and well-being goals was seen across cases. Parents’ goals in maintaining a holistic focus were two-fold: to mitigate the disruptive effects of treatment to normative development, but more centrally, to nurture growth in the psychosocial factors they believed had made their adolescent vulnerable to the eating disorder in the first place. Parents engaged in explanatory work about the cause of the eating disorder and attended to adolescent development because they viewed it as constituent to helping their adolescent recover. For example, in Case 1 the mother believed her daughter’s tendency to avoid confrontation contributed to her vulnerability in developing anorexia, and looked for opportunities to teach her daughter to ask for what she needed, even in the context of weight restoration:Mom: Like, what I was thinking was-, maybe because she hasn’t been gaining, we could tell her, you know “we love you, we support you in your [activity]. You can still go two times a week, but we don’t want you on the travel team this year.”Researcher: How do you think she will respond?Mom: I-, yeah. It all depends on her friend, of course. If her best friend is going to be able to go on the travel team, then she will be very disappointed. ‘Cause then she’d get to go and do all those fun things without her, and they want to do it together, right? Yeah. My poor dear. But you can’t have everything all at once. And I guess she might as well start learning that nowParents perceived the goals of weight restoration and adolescent development as competing and in tension, and they were attentive to balancing the priorities. The balancing act was distinct in each case, and actions were guided by parents’ perception of the adolescents’ progress with treatment and the specific developmental or growing edges they were trying to nurture. In most cases , parents were cautious in tending to these growing edges and took more opportunities to do so when progress with weight was favorable . For example, the mother in Case 2 shared the following:And now, sort of going, “okay, where do I let go of stuff?” I don’t know. So, we’ve developed that new pattern, and that’s fine…but then I have to…there’s still a part of me that still really worries about it. Umm, but at the same time, you kind of go, “Okay, I need to, you know, trust that she is getting better and that she’ll start doing some of the stuff on her own”.Progress toward health and well-being was characterized by a gradual transition from parental trust in the treatment to trust in themselves and their adolescent. As parents progressed through the first phase of treatment, problem-solving how to step back from the structured routine of meal support and the goal of wanting to trust emerged. For instance, the mother in Case 1 shared:Yes, the trust issue is-, I think it’s easier and harder in some ways. Because the meal plan was-, there was so much structure. Right? It was very-, in a way, quite easy to say “Okay, this is correct. So, we do the meal plan, and it has to be-, you have to follow it 100%”. [But now] there’s situations where she calls in... “Is it okay, I’d like to stay here for dinner?” And then, you think “Uh, is it okay?”Parents approached trusting by choosing to be optimistic, but not naïve. Their motivations were varied and layered, such as wanting to be done and move on from weight restoration (Case 4), being exhausted and needing to ease their load (Case 1), knowing their adolescent longed for more normalcy , and the hope that extending trust would foster respect and re-connection (Case 3). In Case 4, trusting came more easily than being cautious , but this was not as much the case in the other families where trusting was a precarious but necessary undertaking. For example, the mother in Case 3 shared the following:Overall...um, I want to find out...how can we measure her emotional stability. How do we find out when she’s in trouble, and- and sort of, was saying yep, a couple of things we’ll be noticing, but...overall, I feel currently very good because [our daughter’s] been very open, at this time. She didn’t used to be. Never-, never in her life. And she was very, very secretive when she was in a lot of trouble. And so over the past weeks, she opened up more than ever before.Attending to markers of progress was central to progressing toward health and well-being as it revealed what was not working and needing to be changed. Also, if progress was favorable, it was a powerful motivator instilling hope the parents’ efforts were paying off. In all cases, progress was identified through direct observation of tangible markers, such as length of meals, ease of eating in new settings, and physical weight. However, progress was also inferred through monitoring less tangible markers, such as parents’ internal sense , comparing behaviors to what seemed normal for a teenager, and the perceived openness and quality of connection with their daughter . In Cases 3 and 4, progress was more challenging to identify given the adolescents favorable response to treatment, and parents had to work out for themselves what these markers would look like. For example, in Case 3, the dad described using strategies like assessing how much trust he felt about his daughter’s progress and identifying what factors contributed to this trust:It is worth noting the two processes of trusting and monitoring progress were conceptually overlapping: Parents monitored how much trust they felt as an indicator of progress toward the overarching goal of health and well-being.Creating capacity refers to projects focused on resourcing the parent emotionally, personally, and practically to do weight restoration. Some of the ways parents resourced themselves included (a) learning about anorexia, FBT, and how to provide meal support ; (b) partnering with others for support and assistance ; and (c) finding meaning in the adversity, such gratitude for facing the challenge now rather than later (Cases 1 & 4) and the belief that going through it would foster a strong parent–child bond (Cases 1 & 3). The main processes by which parents created capacity included managing emotions to maintain a helpful focus, personal work, and resourcing time and finances.Mom: Yeah, I’m just-, I have to say, I’m a bit nervous about her school starting.Dad: Mhmm. [pause]. When-, remember this morning, surely you remember that, all of a sudden, she announced at the breakfast table, “it’s now 5 months...that I have not been thinking about self-, self-harming”.Mom: No, “I haven’t done any self-harming”Dad: “I haven’t done any self-harming”.Mom: Five months.Dad: That was a huge deal. For her, that was a huge deal for her to tell us. I was not aware that she’s keeping record about these thingsMom: I didn’t know either...In all cases, managing emotions to maintain a helpful focus was a mainstay for creating capacity. Projects were characterized by many adaptive emotions that energized parents’ actions, such as hope, determination, devotion, gratitude, and love. But more prominent were heavy emotions that required effort to manage or resolve, such as worry, anger and frustration, guilt, uncertainty, and grief. In Case 3, co-regulation was an important strategy for managing emotions. In the joint conversation below, the dad had just revealed feeling fearful their daughter might run away. In the mom’s self-confrontation, she noted his outlook may be more pessimistic because of the different relationship they each have with their daughter . A moment later, the tables are turned where the dad senses concern in his spouse’s comment and responds with a helpful perspective:More evident in Cases 1, 2, and 4 were efforts to manage emotions via internal processes and self-regulation strategies. For example, managing expectations , practicing acceptance of things they could not change , and learning to recognize the degree of worry they felt for their daughter might not always a trustworthy guide for action (Cases 1 & 2). The parents in Cases 1 and 2 wished there was a counselor on the treatment team assigned to support them individually.We’ve had this role, unfortunately. You know, me-, I’m the kind one, the understanding one and [my husband] sets the rules. And he’s, you know, the disciplinarian. And it took several weeks, or months I would say, for me to understand that with- by me being kind, I was prolonging her illness. Uhm, so I had to kind of-, in a way-, really change who I was. And that was tough for me. But it was absolutely necessary.In three cases , parents created capacity by adopting new ways of being in relation to themselves and their adolescents. For these parents, the personal work was characterized by heightened self-awareness as well as internal struggles. For example, the mother in Case 3 noted how challenges to, and the reconstruction of her self-view, helped her be successful in weight restoration:…You know, we just went camping and we went and did the showers together. And I’m not feeling comfortable doing it. But at the same time, going, I can’t be showing her I’m not comfortable (tearful). Because it’s about being comfortable in your skin, whatever size you are. And there’s the whole awful part around it as well (tearful), trying to teach her about…being comfortable around-, being comfortable in your own skin, but at the same time not being comfortable in mine right now (crying)”.In Case 1, maintaining a healthy weight was meaningful to the mother’s health and self-image as a breast cancer survivor. However, she had supported her daughter by eating the same high-calorie meals together, gaining weight herself overtime. Despite the discomfort she felt in her own body, and the fear her body could work against progress , she choose to model body confidence as a step in service of her daughter’s weight restoration:Now, what if it happens again, I have-, I can’t take anytime off work, I don’t have any money, I don’t know how I’m going to help her!” …Like, I’m done. I’m done. I’ve done everything I can. And, all my cards are out, and gone.For Cases 1 and 2, inadequate time and financial resources presented practical challenges to the parents’ overall capacity, and for these parents, processes related to resourcing time and finances were fundamental to their projects. For example, strategizing ways to manage work absences given lost income and depleted savings featured prominently in these cases. Functional steps here included things such as driving a longer distance to get cheaper groceries, cutting back on sleep to fulfill work obligations, turning down new work despite needing the income, and reluctantly asking older children to monitor meals that could not be supervised due to work. In the months ahead of the interview, the mother in Case 2 lived off her savings and a medical leave to care for her daughter. A day before the interview, she learned her daughter had lost 2 pounds, a setback that made the challenge of resourcing weight restoration feel insurmountable:Dad: Um, so, if she’s so worried about [our daughter], what [she] would have for breakfast and lunch, why didn’t she tell me that? She sort of already had a plan.Researcher: You wanted to be included.Dad: I wanted to be included. That was-, for us-, that was very clear. Because we sometimes were on different pages, and sometimes we didn’t agree. We needed to agree, and the best way to do it is to sort of put out a plan. Whether it’s written or not. Let’s say, “Okay, this is what I think, this is what you think, do we agree?”Negotiating and coordinating partnerships refers to projects that were focused on staying united in their efforts to ensure effectiveness . The projects were characterized by many kinds of partnerships, including professionals, older children, and extended family members, but the central partnership being coordinated and negotiated was with the co-parent. An array of family structures and relational dynamics were represented in the data, and the process of negotiating and coordinating with the co-parent was distinct in each case. For example, in Case 3, the partnership was approached through functional steps like sharing concerns and brainstorming solutions, dividing roles and responsibilities, and monitoring for agreement and consistency in plans and actions over time. During the joint conversation, the dad noticed his spouse had been worrying about something and had not included him in trying to address it. He shared the following in his self-confrontation:And so much of that frustration with- with him not...I keep saying, him not buying in, but him not, like, just wanting to find out “what can I do to help?” I've never heard him say that. I've never heard him say “What do you need me to do to help?" or “How can I help?" "What do I need to change to help [our daughter]?" It's all like-, it's all like, getting mad at me for forcing him to do something...The mother in Case 1 also monitored her own and her spouse’s actions for agreement and consistency. However, his low-level of involvement created additional problems to manage and solve and she believed doing weight restoration on her own would have been easier. Although the mother had accepted full responsibly for weight restoration, coordinating with her spouse remained central given the need to ease her burden. Functional steps in this case included processes like updating him on what was difficult for their daughter at mealtimes, asking him to say things that would be supportive and helpful to the daughter, and dealing with his anger and irritation at being asked to change. Emotional processes salient here included feeling let down and abandoned, and wishing for her efforts and sacrifices to be acknowledged and appreciated:Mom: I should be asking them more [about meals], but I don’t, I don’t want...to be a bitch either, you know?Researcher: Do you feel like you would be being a bitch if you did that? Or that they would interpret it that way?Mom: Yeah, they would definitely interpret it that way. Yes. I don’t know how to explain it. And it’s probably just my interpretation of it all, and who knows if I’m right. But it’s uncomfortable if you make anything uncomfortable for them [laughs]. They make it double or triple uncomfortable for you. So basically, I just don’t go there.The projects in Cases 2 and 4 were negotiated and coordinated in the context of a divorce and separation, where the superordinate goals were (a) to pull together with their co-parent for their adolescent and (b) to preserve the adolescents’ sense of unified family support. Choosing their battles carefully and practicing acceptance of disparate parenting philosophies and weight restoration strategies were salient functional steps in both cases. At the level of emotions, the mothers felt gratitude for the involvement of the co-parent but also worried about introducing conflict that would strain the relationship and make things more difficult. For example, in Case 2, the mother hoped meals would happen similarly at both homes but was reluctant to act toward this goal:It just adds more worry to me because, I don’t know, I just wish he would take it more seriously. Sometimes I think that he just doesn’t take it as seriously as-, because my set schedule, I don’t think they do that at their house.The partnership was negotiated by preserving harmony between the homes, which in this case meant not knowing how well coordinated the efforts were:At first it was like, “Oh, you still want me to cook for you?” Like, literally. “Oh you don’t want to come over on the weekends, but you’re okay during the week, after you’re home from work and you’re tired, I feed you?” Like, “Hello? Uh, that’s not happening”. And then, you know, it’s like, “Actually, we need to do this for [our daughter]. Darn. Okay”. So suck it up, bury those emotions.The partnership in Case 4 was negotiated by resuming old family routines and coping with the emotions, as well as old and new conflicts, this stirred up. For example, on resuming family dinner-time meals shortly after their daughter’s diagnosis, the mother shared:Researcher: But there’s some aspects of the re-feeding that created some uneasiness?Mom: Oh, totally. Yah. A lot of uneasiness. For her, and I’d say myself as well. What if they’re wrong? What if they make her gain too much weigh, and then- and then she feels like she’s…too heavy.Researcher:And that might keep her from going out and being social?Mom: Yeah. Yeah. You’ve hit it-, I think you’ve hit it really well. It’s sad, it’s scary.A unique process in the collection of cases emerged in Case 4, where the project arose from and was enacted within a belief system that viewed a slim body to confer protective factors for the adolescent: “the thinner you are, the more beautiful you are, the easier the world is for you. Like I-, I truly…believe that. You know, they’ve done studies on it”. In this case, the mother’s idea of well-being rested heavily on social acceptance: “You want your kid to be-….to fit in, to have awesome friends, and obviously that’s easier if you look a certain way as well”. The tension between weight and well-being goals was resolved by the mother approaching weight restoration with healthy foods with the hope the daughter would not exceed her ideal weight. These underlying beliefs and actions also shaped the parent’s goals and actions in relation to the treatment:Uhm, yeah. Just trying to put pieces together. Being kind of confused myself. How do I express what I think she might be going through? As I’m watching it back, I’m thinking, those are-, those are my thoughts, and are those my confusions. Maybe my issue more than her issue? My issue for her?The mother’s examination of her own beliefs in relation to cultural ideals related to body shape, self-esteem, and social acceptance was an ongoing process, as evidenced by the following from her self-confrontation:This study described how parents participated in the weight restoration of their adolescent while engaged in FBT for anorexia. It is the first study to examine parents’ actions while they implemented the treatment and represents an important shift in thinking from discrete parent or treatment variables correlated to or predictive of weight outcomes , 46 to tThe main processes by which parents in this study progressed toward health and well-being included maintaining a holistic focus, monitoring progress, and trusting. Parents acted as agents of change vis-à-vis the treatment goals and did so in service of a broader parenting project concerned with the adolescent’s overall well-being. For the parents in this study, weight restoration and adolescent development were enacted simultaneously with reciprocal influence well before the adolescent achieved a stable weight, as is recommended in FBT. Some parents navigated the tensions and balanced the competing priorities by trusting the treatment framework, finding meaning in the adversity, as well as referencing their informal theories about the cause of the eating disorder to guide day-to-day decision making. Explanatory work is viewed as an impediment in FBT because it risks producing parental guilt, causing self-doubt, hesitancy, and ineffectiveness . HoweverMonitoring progress and trusting were the main functional steps parents took in service of progressing toward health and well-being. In monitoring progress, parents looked to the adolescent’s physical weight but also assessed less tangible markers to evaluate the effectiveness of their efforts, such as the quality of their relationship with their adolescent. With evidence of steady and reliable progress, the challenge of trusting emerged for parents. Trusting was the process by which parents moved away from the structured routines of treatment, and their motivations to trust were varied and layered. For example, parents were motivated by hope, exhaustion, and necessity, as well as successful weight gain. In FBT, progress is marked by the gradual return of parental control over food and weight back to the adolescent . HoweverIncreasing parental self-efficacy with the tenets of FBT is the main approach to mobilizing parental resources , 19, 50.Parents in this study were both the producers of resources, and their actions were shaped by the resources available. Some of the greatest challenges faced by parents were because they lacked resources, including unmet financial, social, counseling, or psychoeducational needs. Poorly resourced projects created practical and emotional challenges that diverted parental energy and attention away from the steps of treatment. Hillege et al.  and KeitFBT was developed on the premise that two parents from an intact family would be available to help facilitate the treatment and stresses the importance of parental unity to treatment success , 17. TwoThis study could have been strengthened in a variety of ways. First, the sample of participants had limited diversity as most were mothers who identified as Caucasian. It is reasonable to expect the actions of parents from diverse ethnic and cultural backgrounds may be distinct and diverge in important ways from those described by parents here. In addition, the underrepresentation of fathers is an important limitation not uncommon to research on caregivers’ experiences of anorexia. Considering how prominently current and ex-partners featured in the actions of mothers in this study, it would have been informative had their voices been captured in the findings. Second, in real life a parent’s weight-restoration actions would take place constantly in many contexts, but issues such as privacy and practicality make access to these actions difficult. Action-project method was developed with this challenge in mind, and the method looks at interactions and dialogue between a participant dyad thereby allowing for data on joint action. For the single parent participants, researchers acted as conversation partners to create a dyad. Given the relational nature of weight restoration, it is reasonable to expect the absence of this data diminished the richness and fullness of the findings.This study sought to increase knowledge and understanding of parent-led weight restoration by investigating it from the parent’s perspective during the time they were engaged in these actions. It examined parents’ actions through the perspective of contextual action theory, attending to parents’ actions in context and bringing the voice of the parent to the forefront. The findings supplement and extend current thinking about how parents achieve weight recovery goals in FBT and shows that in addition to applying behavioral strategies to bring about change, parents undertake a myriad of explicit and tacit goal-directed actions and strategies that are embedded in and emerged from a larger system of intertwined projects and careers in their lives. As parental involvement is elemental to favorable treatment outcomes in FBT, it is hoped the study findings will inspire ongoing efforts to assist and support parents engaged in this treatment.


Research about decision-making capacity has been growing in the last decades. That relates to more concerns regarding patients’ autonomy, and an increase in diseases that can negatively impact capacity. This research aims to: explore perceptions, legal aspects, and assessment procedures related to healthcare decision-making capacity in older adults with cognitive impairment; and study the first version of a new assessment instrument of this capacity.Nine focus groups were conducted, including healthcare, law and justice, nursing home professionals, institutionalized older adults, and dwelling older adults. Focus group discussions followed semi-structured interview scripts, specifically developed for each group. After group discussions, the assessment instrument was presented, and participants were asked to evaluate each item relevance and comprehensibility. Qualitative coding of the transcriptions was performed with resource to MAXQDA, using direct content analysis.Six primary themes emerged from the qualitative analysis: Decision-making capacity features; Abilities implied in decision-making; Factors influencing decision-making; Obstacles to decision-making; Legal aspects; and Assessment procedures.Results corroborate previous theoretical formulations of capacity. Generally, research results have implications for clinical and assessment practices, as well as preventive strategies that can improve older adult’s decision-making capacity. Assessment procedures of capacity should include a thorough protocol for the assessment of cognition, functionality, depressive symptoms, and decision-making abilities. In this respect, the need for an assessment tool that can provide valid information during evaluation processes is highlighted. Concerning the strategies to promote decision-making capacity, these rely on improving older adult’s health literacy and healthcare providers communication skills, as well as conduct actions to reduce stigma toward people with dementia. Dementia represents a general term used to describe a significant decline in cognition, with a profoundly negative impact on the person’s functionality . DementiIn parallel, during the last decades, we have assisted to an increased concern regarding mental and civil capacity issues. Civil capacities refer to multiple domains required to maintain an autonomous and independent life. Initially, research in this field was encouraged by the deinstitutionalization movement . HoweverHealthcare decision-making capacity assessment should include medical history, clinical interview, neuropsychological and capacity assessment, with a specific tool . The incIn what concerns the Portuguese context, according to the Portuguese Penal Code, medical-surgical treatments must be preceded by patients’ informed consent . The patient’s consent is valid if they had been previously informed about the diagnosis, nature, extent, and possible consequences of the treatment. Furthermore, consent is valid when the patient has the necessary discernment to appreciate the treatment’s scope and meaning . However, what specific abilities the patient must have to discern about proposed treatments are not detailed, nor how they should be assessed. Circumstances of impaired capacity fall under the Legal Regime of the Accompanied Adult , which stipulates that the specific acts in which the adult needs to be accompanied or substituted in decision-making are judicially defined .There are no assessment instruments of consent capacity for the Portuguese population. To compensate this need, and considering the fragilities of previous instruments identified above, the research team decided to develop a new assessment instrument. Therefore, this study presents a qualitative study on healthcare decision-making capacity, as part of a project that aims to develop a clinical assessment tool of this capacity, valid for older adults with neurodegenerative disorders like mild cognitive impairment and Alzheimer’s Disease, named Capacity Assessment Instrument—Health . This instrument will include three clinical vignettes, a capacity assessment interview (to be conducted after each vignette presentation), and a questionnaire of healthcare values and preferences.The development of the capacity interview was based on a theoretical revision, as well as previous assessment instruments available by the authors. The capacity assessment interview follows a structured script with open-ended questions. It has as theoretical framework The healthcare values and preferences questionnaire followed the same steps, regarding the revision of theoretical frameworks and previous assessment instruments. This questionnaire allows the assessment of the following variables: the desire for family and health professional involvement when making a decision, concerns regarding religious beliefs, pain management, and dependency .After finishing the CAI-Health first version, a qualitative study with focus groups was conducted. Despite the lack of explicit assessment procedures in Portugal, it was likely that professionals had previously conducted or accompanied capacity assessment processes, which made explicit the gap between clinical practices and available research regarding the same. Also, despite the four abilities model being widely accepted and used, as mentioned, it has been based on United Sated legal standards of competence to consent. Given that an instrument for the Portuguese population was being developed, it was considered relevant to ensure that these abilities were valid for the Portuguese context. Holding these concerns as a starting point, qualitative research with focus groups was designed. This was deemed the best approach since it would allow for the exploration of individuals’ practices and perceptions regarding capacity assessment. Furthermore, as the research team indented to ascertain if the previous framework of four abilities was valid for the Portuguese context, the focus groups methodology was particularly suitable, since it is useful to amplify current theoretical knowledge, and to identify the most important variables when studying complex subjects, as is the case of decision-making capacity . This quThe research protocol was reviewed and approved by the Ethic Commission of the University of Beira Interior (process number CE-UBI-Pj-2020-072:ID2172). The research design ensured participants’ anonymity. Considering the research goals, it was expected that participants might share some personal and professional experiences that should be kept confidential. Therefore, participants were asked not to disclose information shared during focus groups.N = 38) in 2020. To identify participants of interest, a theoretical sampling approach was followed, which means that researchers have identified characteristics that were likely to impact response variability based on previous knowledge  were considered of interest for frequently facing situations that require thorough capacity assessments. Targeted professionals were psychologists, physicians, and nurses. To be included, participants should have work experience with older adults, excluding professionals specialized in children and younger adults. A group of recently graduated healthcare professionals was also planned. It was believed that recently graduated students could increase response variability, since their experience is mostly observational, and they frequently have a more critical view of common clinical practices.Law and justice professionals (LJP) were targeted because the justice system is responsible for capacity determinations. The inclusion criteria allowed the participation of lawyers, judges, jurists, notaries, and conservators.On the other hand, nursing home professionals (NHP) were identified as an interest group for their privileged work experience with the targeted population. Inclusion criteria were to have worked in the nursing home for more than 3 months and to be part of the nursing home’s technical or clinical team.At last, older adults were also pointed out as an interest group, as they belong to the correspondent age range of the target population and shared the same cultural and historical background. Inclusion criteria were to have at least 60 years and not have a diagnosis of neurocognitive disease. Considering that a high percentage of older adults in Portugal live in nursing homes , it was via email. The research goals were fully described upon the invitation, as well as the voluntary character of the participation, and the possibility to cease the participation at any moment. Participants’ sociodemographic features from each group can be consulted in Participants recruitment for HP and LJP focus groups were conducted through the identification and invitation of local and nationally recognized professionals in their work field. Regarding the NHP focus group, professionals from different geographical areas who had collaborated in previous research projects were invited to participate. Three participants of this group identified and established contact with residents from their nursing homes to participate in this research. Participants recruitment for DOA was conducted with support from a local network of the European Anti-Poverty Network. With the exclusion of older adults focus groups, all participants were invited The focus groups were conducted online, through Zoom Platform. The reason to resort to online meeting was due to the National Government’s social distancing recommendations to prevent COVID-19 dissemination.Two researchers were selected as mediators of the focus groups. Regarding the sessions management, focus groups with healthcare, nursing homes, and law and justice professionals followed the same structure: (1) Presentation of the session goals’, informed consent collection, and participants’ presentation; (2) Group discussion concerning healthcare decision-making capacity, based on semi-structured interview scripts; (3) CAI-Health presentation and analysis; (4) Suggestion of new items or dimensions; (5) Session closure. Focus groups with older adults both residents in institutions and the community included the same steps, with the exclusion of steps three and four, due to technical difficulties.How do you define healthcare decision-making capacity? What aspects are implied in decision-making regarding healthcare? Focus groups with healthcare and nursing home professionals included questions regarding capacity assessment, like: In your professional context, have you ever conducted or followed an assessment of decision-making capacity in healthcare? What tools were used/would you use? Law and justice professionals were asked questions about national legislation regarding decision-making, including: Are there any legal standards that specify which characteristics are necessary for a person to be considered competent in healthcare decision-making? Focus groups with older adults  followed the same interview script, which focused mainly on participants’ personal experiences: What aspects do you have in mind when you have to decide on your health? What aspects influence your capacity to make decisions regarding healthcare?Semi-structured interview scripts were developed for each focus group. Interview scripts were previously presented and discussed with a group of experts. Despite having specific goals for each group, all scripts included core questions related to healthcare decision-making capacity definition and implied abilities, such as: Healthcare professionals were divided into three focus groups, due to schedule incompatibilities. One of them, which included three medical specialists, was asked to evaluate the clinical vignettes included in CAI-Health. Results regarding clinical vignettes will be presented elsewhere. Institutionalized older adults were also divided into three focus groups, due to the high number of participants. Therefore, nine focus groups were conducted: one group with the law and justice professionals, nursing home professionals and dwelling older adults, and three groups with healthcare professionals and institutionalized older adults.After the session, participants were sent an online questionnaire to collect sociodemographic data. Nursing home collaborators sent sociodemographic data from older adults who participated in the focus group since they did not have the means to fill in online questionnaires. All older adults gave consent for formal caregivers to share their data. Focus groups lasted between 1 and 2 h and were digitally recorded. Group discussions were later fully transcribed.Data were analyzed through directed content analysis. This approach to qualitative analysis differs from the conventional analysis since the initial code definition is guided by theory. The directed content approach’s main advantage is that it allows confirmation and expansion of previous theoretical frameworks . The autContent analysis began with the definition of initial coding categories, based on All transcripts were carefully reviewed, and all relevant text sections regarding decision-making capacity were highlighted. Next, highlighted sections were coded with pre-determined categories. Afterward, text sections that did not match pre-determined categories were given new ones. The option for highlighting all meaningful text sections and starting coding afterward was made to ensure that all content related to research goals was captured, increasing results trustworthiness . When thFinally, given the high number of categories and to facilitate the data interpretation, a framework of themes was developed by the research team. Within the content analysis, the attribution of themes allows for organizing and interpreting data content . This prThe trustworthiness of data was measured according to Lincoln and Guba’s criteria of credibility, transferability, dependability and confirmability, as presented by .The development of semi-structured scripts, expert consultation, and the inclusion of participants with various backgrounds to increase response variability aimed to improve research credibility. Triangulation in data analysis, descriptions of the interview scripts and participants’ inclusion criteria detailed in this paper have the purpose to ensure confirmability as far as possible. Furthermore, the detailed descriptions of data collection and analysis also intend to address dependability, allowing the study to be repeated. In the same way, participants’ sociodemographic data, and theoretical and contextual framework were presented to enable other researchers to evaluate the suitability of comparisons that is, transferability.From coded data interpretation, multiple themes related to healthcare decision making-capacity emerged. The number and scope of themes reflect the complexity of this concept and includes: (1) Decision-making capacity features; (2) Abilities implied in decision-making; (3) Factors that influence decision-making; (4) Obstacles to decision-making; (5) Legal aspects; (6) Assessment domains. These themes allow to identify professionals’ and older adults’ perceptions of healthcare decision-making capacity, as well as assessment domains and legal aspects related to this capacity in Portugal. The first theme emerging from content analysis regarded participants’ perception of decision-making capacity in healthcare. Three categories are included in this theme: self-determined; specific; and fluctuating. Initially, self-determined was coded as “personal decision,” whereas fluctuating was firstly labeled as “progress and setbacks.” Decision-making is seen as self-determined since it is concerned as a personal decision that the person is entitled to. It is also specific to each capacity domain, meaning that “the same person might be able to give consent to a determined act, but not have the capacity to consent to another one” . At last, participants considered decision-making capacity to be fluctuating. That means that capacity is not considered to be a static trait, but rather an aspect that can vary over time, and which does not always follow a linear process of loss. In this sense, participants mention that “there can be improvements and setbacks in our capacity” . One participant gave an example of this fluctuating feature “I’ve had the chance to watch two different appointments of the same patient (…) in one of them the patient barely spoke, in that day he wasn’t capable of deciding, and on the other appointment he was talking, asking questions and was capable of making decisions” .This theme contains the categories derived from On what concerned appreciation, it involved acknowledging its own health situation, appreciating the consequences of one’s own decisions (recognizing its power to decide), as well as assessing health professionals’ intentions . Communicating a choice was clearly stated as the “ability to verbally communicate these decisions” . Finally, cognition, which did not match initial coding categories, was stated as “being cognitively able to make a choice” , with HP identifying cognitive functions implied in decision-making, such as “executive functioning” .Participants identified multiple factors that influence decision-making. These relate to internal or external aspects which may impact how patients make decisions, or which decisions they tend to make. This theme includes eight categories: Family involvement; Healthcare professional’s involvement; Emotional state; Literacy; Financial overwhelm; Religious beliefs; Dependency; and Personal history.Family involvement relates to the patient’s wish to consult their relatives when a healthcare decision is required. This need was reported by both professionals from different areas [“the person prefers to have someone to help them decide” ], and by older adults “whenever I have health issues, I have a close relative who is always consulted” . On the other hand, healthcare professionals’ involvement refers to the patient’s desire for advice from the healthcare professional. As in the previous category, this was expressed by both professionals from different areas, as well as older adults, as it can be seen in the following citations: “people frequently put the decision on the professional’s side” ; “Frequently the patient turns to us and says, ‘you know best, you are the one that should decide’” ; “I always want to know the doctor’s opinion, because we did not study to be a doctor” .HP and NHP mentioned the impact of emotional state on decision-making, particularly regarding the negative impact of depressive states on decision-making capacity. In this respect, they mentioned that “if they are in a period of greater sadness, and depression, it is enough to condition their decision-making capacity” .Knowledge regarding health issues, “the person’s literacy in the area for which they are making the decision” , also emerged in content analysis. In addition to HP, older adults also mention literacy has been of great importance, as reflected here: “to have knowledge of things is very important in what concerns health” .The financial burden was mentioned by NHP after CAI-Health presentation and analysis. When asked if more items or dimensions should be added, participants specifically referred to this category: “The financial part, the economic cost (…) in my experience, that is a very relevant aspect” .Religious beliefs, initially coded as “faith” were outlined by both nursing home professionals and older adults. In the focus group with older adults, a participant described how their religious beliefs were important for them to accept the proposed treatment and believe they could recover: “I never shared a tear when I discovered I had that health problem because I have a lot of faith in God” .Dependency emerged in the older adults’ focus group analysis. Participants shared their views on how health issues must be timely addressed by each person, since in the opposite case “either you became disabled for the rest of your life and cannot work, or you become dependent, and you’ll go to a nursing home, or become dependent of your children, husband, or of someone who takes care of you” . The last category, personal history, emerged within all focus groups with professionals from different areas. Participants believe that decision-making is also influenced by “the patients’ beliefs, myths, fears and previous experiences” .Identifying obstacles to decision-making was not a goal of this research. Nonetheless, during data analysis, several categories emerged in relation to this theme across the different focus groups, except for IOA. The categories included in this theme are limitations to self-determination, stigma, communication, and information access.Limitations to self-determination emerged in the analysis of NHP and LJP focus group transcriptions. It describes situations where the patient’s right to decide about their healthcare is compromised by external factors. These can relate to “being influenced in some way” , or “the time that is given to the person” , resulting in situations where patients “sometimes end up accepting things they did not want to accept because they are constrained in their freedom of decision” .Stigma emerged within the HP and LJP focus groups and relates to negative preconceived beliefs that healthcare professionals hold toward some patients. This category includes stigma related to disease “you cannot just assume that a person who has Alzheimer’s disease or other dementia cannot make decisions regarding their health. That does not make sense to me. What happens, in reality, is exactly that” , as well as the stigma associated with age “for example with my aunt, who is 92 years old, professionals always assume that she does not have capacity, without performing any assessment” .communication. Participants described how healthcare providers’ communication is frequently inadequate, considering the patients’ scholarly level or language skills. A participant from the DOA group indicated that “some words that a lot of doctors use are too sophisticated for people to understand its meaning” . In this context, it was mentioned in the HP group that “we physicians often use terms which are absolutely undecipherable for patients” . A participant from the same group pointed out as a possible aggravating factor that “I believe that none of us was taught on communication skills during university education” .The two last categories are communication and information access. The first was observed in all research groups, and it relates to doctor-patient communication. Initially, this category had been coded as “technical language” and “speech complexity,” until it was labeled The last category, information access, includes the duty to inform and the right to information and non-information. On one hand, all focus groups reflected the idea that “the patient should have all the available information about the proposed procedure” . On the other hand, LJP also pointed out that “professionals should know precisely if the patient wants to hear about their diagnosis or not” , since the law states that patients can refuse to be informed about their diagnosis.The categories that emerged within this theme were: Escort; Informal Caregiver; Informed Consent; and Advance Directives. Identifying and discussing legal questions and procedures associated with healthcare decision-making capacity was a specific goal of the focus group with LJP. Therefore, only one subcategory (living will) emerged from a different focus group.escort and informal caregiver, concern two different figures of the Portuguese Justice System. An escort may be requested to Court if an adult finds themselves unable to fully exercise their personal rights or fulfill their duties. In such cases, the escort allows that “the person can be accompanied in their decisions and that some decisions can even be taken by the person accompanying them, or by the people accompanying them, there can be several, depending on the decision areas that require assistance” . Regarding the escort’s power to make healthcare decisions on behalf of the patient, one participant reported “what the Status of the Accompanied Adult (Estatuto do Maior Acompanhado) states is that, unless otherwise specified, personal rights continue to be exercised by the individual (…) our health is a personal right” . In contrast, concerning the informal caregiver, participants described that “the Statute of the Informal Caregiver does not give the caregiver authorization to make health decisions, but it does give them the power to access the health information of the person they are taking care of” .The first two categories, Informed consent referred to the legal instrument through which people can decide about their health “it is me who decides, and I do it through informed consent” . Finally, advance directives included health prosecutor and living will. The health prosecutor is the legal figure who can substitute the patient in the decision-making process “it’s very clear for me, from a legal point of view, that the person who must make the decision is the patient. If they cannot, it’s the health care proxy, if they have named one” . In its turn, the living will be of use “if due to transitory or definitive causes I am not in a position to give informed consent, the health professional must verify if I have made a living will and fulfill it” . This was the only subcategory of this theme that also emerged in the analysis of NHP transcription.Identifying capacity assessment domains was defined as one of the main goals of HP focus groups. Therefore, the categories in this theme emerged from the transcript analysis of the HP discussion. The following assessment domains were identified: cognitive assessment; functional assessment; emotional state assessment; and life context.With respect to cognitive assessment, participants reported the use of cognitive screening tests, such as “the Mini Mental State Examination, the Clock Drawing Test, and Montreal Cognitive Assessment” . On what concerned functional assessment, regarding specific assessment tools, participants reported using “the Lawton Index and sometimes the Katz Index” . Targeting emotional state assessment, participants indicated “the Geriatric Depression Scale” . The last category, regarding life context, reflected the resource to informants “have someone else to turn to and ask for additional information”  and gathering information concerning living conditions.appreciation, which might be specific for older adults. In addition, this study allowed to identify specific obstacles to older adults’ capacity to make healthcare decisions. This finding has direct implications for clinical practice, as it allows the conception of preventive measures that may promote older adults’ capacity.This study uses a qualitative methodology, which is an innovation in the study of healthcare decision-making capacity. Research results seem to validate and extend Grisso and Appelbaum’s theory, indicating a new ability implied in decision-making, as well as a new conceptualization of The themes that emerged reveal that decision-making is a complex concept, involving multiple abilities, psychological factors, as well as external influences . FurtherContent analysis results support In addition to the four abilities in Regarding factors influencing decision-making, all categories were already included in CAI-Health, with exception of financial overwhelm, emotional state, literacy, and personal history. Family and healthcare professionals’ involvement, religious beliefs, and dependency have been identified in previous studies about decision-making , and werThe emergence of obstacles to decision-making had not been established as a research goal, but it is coherent with previous literature which identifies professionals’ bias as a possible barrier to decision-making . GeneralOn what concerns the assessment domains contemplated by participants, it is of interest to note that cognition and emotional state, that emerged in other themes, are also contemplated here. To our understanding, this corroborates our view that these aspects should not be part of a tool to evaluate capacity but included in a broad protocol that should be undertaken during a capacity assessment. One limitation that stood out was the lack of a specific instrument to evaluate capacity. Although participants had a variety of tools to evaluate variables related to capacity, they mentioned the need for a specific instrument to assess decision-making. In this respect, participants from professional groups highlighted the pertinence of developing CAI-Health, considering it adequate to evaluate capacity and manifest interest to use it in their practice.When examining these research findings, some limitations must be taken into consideration. First, concerning the sample size, focus groups should ideally be composed of six to a maximum of 15 participants . In thisDespite mentioned limitations, it is considered that research results have implications for clinical and assessment practices. From a clinical perspective, considering that cognitive fluctuations can impact capacity, information’s regarding healthcare issues and treatment options should be given at the time when the older adult is most likely to be alert and oriented. When appropriate, healthcare providers should also ensure that the person recognizes that they can choose between adequate treatment options, as well as refuse treatment. Regarding assessment procedures, research results indicate that capacity assessments should rely on a comprehensive protocol. These would include assessment tools of cognitive functioning, depressive symptoms, functionality, and decision-making abilities. At last, preventive strategies to promote older adults’ autonomy can also be drawn from research findings. These include actions to increase health literacy among older adults and health providers’ knowledge of decision-making capacity and communication skills. Since literacy influences people’s ability to understand information, measures to increase older adults’ literacy on health could promote their capacity to make decisions. On what concerns healthcare providers, first, health professionals should have more knowledge regarding decision-making capacity. This would allow decreasing frequent misconceptions regarding age, neurocognitive disorders, and their relationship with capacity , and conDecision-making capacity outlines go further than assessment procedures, dwelling around ethics, cultural beliefs, healthcare guidelines and practices, legislation, and education. It is important to notice that these study results represent the perspectives and practices of a restricted number of Portuguese professionals and older adults. In this respect, it would be of interest to replicate this research with other populations, in order to compare and identify variations in assessment practices. One important contribution of this research is the identification of practical aspects that can be conducted to promote healthcare decision-making capacity. These relate to the areas in which health professionals need more training, which could be accomplished by including communication skills and capacity issues in university curricula. However, it appears vital to go further and improve society’s literacy regarding capacity, enhancing people’s knowledge about their rights and means to protect those with compromised capacity.Regarding CAI-Health, the capacity assessment interview, based on the four abilities model  meets thanapaula@fcsaude.ubi.pt.The datasets presented in this article are not publicly available (because participants were asked to consent to the processing of data only within the scope of the specific objectives of this investigation) but are available from the corresponding authors upon reasonable request. Requests to access the datasets should be directed to The studies involving human participants were reviewed and approved by Ethical Committee of University of Beira Interior (reference CE-UBI-Pj-2020-072). Written informed consent for participation was not required for this study in accordance with the national legislation and the institutional requirements.AA and RA were responsible for facilitating the focus groups. AA transcripted group discussions and wrote the manuscript in consultation with MS, SF, MV, LS, and RA. AA, MS, SF, MV, LS, and RA conducted data analysis. All authors contributed to the article and approved the submitted version.AA is a PhD student at Faculty of Psychology and Educational Sciences, University of Coimbra, supported by Fundação para a Ciência e a Tecnologia (FCT), with an Individual PhD Grant , financed by national funds from the Ministério da Ciência, Tecnologia e Ensino Superior (MCTES) and the European Social Fund (ESF-EU) through Programa Operacional Regional do Centro (PORC-EU). University of Coimbra supported open access publication fees.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


In recent years, social media has become a rich source of mental health data. However, there is a lack of web-based research on the accuracy and validity of self-reported diagnostic information available on the web.An analysis of the degree of correspondence between self-reported diagnoses and clinical indicators will afford researchers and clinicians higher levels of trust in social media analyses. We hypothesized that self-reported diagnoses would correspond to validated disorder-specific severity questionnaires across 2 large web-based samples.The participants of study 1 were 1123 adults from a national Qualtrics panel . The participants of study 2 were 2237 college students from a large university in the Midwest . All participants completed a web-based survey on their mental health, social media use, and demographic information. Additionally, the participants reported whether they had ever been diagnosed with a series of disorders, with the option of selecting “Yes”; “No, but I should be”; “I don’t know”; or “No” for each condition. We conducted a series of ANOVA tests to determine whether there were differences among the 4 diagnostic groups and used post hoc Tukey tests to examine the nature of the differences.F3,1097=2.75; P=.04), somatic symptom disorder , and alcohol use disorder , the pattern of mean differences did not suggest that the individuals were accurate in their self-diagnoses. In study 2, for all disorders but bipolar disorder , ANOVA results were consistent with our expectations. Across both studies and for most conditions assessed, the individuals who said that they had been diagnosed with a disorder had the highest severity scores on self-report questionnaires, but this was closely followed by individuals who had not been diagnosed but believed that they should be diagnosed. This was especially true for depression, generalized anxiety, and insomnia. For mania and bipolar disorder, the questionnaire scores did not differentiate individuals who had been diagnosed from those who had not.In study 1, for self-reported mania (In general, if an individual believes that they should be diagnosed with an internalizing disorder, they are experiencing a degree of psychopathology similar to those who have already been diagnosed. Self-reported diagnoses correspond well with symptom severity on a continuum and can be trusted as clinical indicators, especially in common internalizing disorders such as depression and generalized anxiety disorder. Researchers can put more faith into patient self-reports, including those in web-based experiments such as social media posts, when individuals report diagnoses of depression and anxiety disorders. However, replication and further study are recommended. Mental disorders are one of the leading public health problems worldwide -3, yet tIn recent years, social media has become a rich source of data for studies of mental health communication, disclosure, prevalence rates, and trajectories . In the Analyses of social media data, such as the works of ten Thij et al , BathinaAlthough text analysis is the most commonly used method to study mental disorders at scale, the reliability and validity of web-based data have been called into question, particularly with respect to self-reported diagnoses. Although we have reason to believe that individuals tend to be relatively accurate reporters of their mental health experiences , relyingA better understanding of the degree of correspondence between self-reported diagnoses and clinical indicators will afford researchers and clinicians higher levels of trust in self-reported diagnoses on social media. This is particularly the case for a common approach that relies on web-based statements of self-reported diagnoses to establish clinically relevant samples -18.The primary aim of this study was to examine whether people are “accurate” when they report that they are or should be diagnosed with a mental disorder. In other words, does an individual’s belief that they should be diagnosed with a disorder correspond to their scores on validated self-report measurements of their symptoms. We addressed this research question using two large-scale samples of thousands of individuals: (1) a nationally representative sample of adults and (2) a large sample of university undergraduates. The participants were asked to fill out self-report questionnaires on a variety of mental disorder symptoms and asked whether they had ever been diagnosed with any conditions or felt that they should be diagnosed with those. We first hypothesized that there would be a positive relationship between self-reported disorder-specific severity scores and having received a diagnosis. Second, we expected that there would be significant differences between the participants who believed that they should receive a diagnosis and those who reported that they had never been diagnosed. Finally, we hypothesized that the group of participants who believed that they should be diagnosed would look more similar to the participants who had been diagnosed than to those who had never been diagnosed, lending initial credibility and support for relying on self-diagnoses in future research.This study was approved by the institutional review board of Indiana University (#2002549202 and #2005948214).The participants were recruited for a broader study called the Survey Online Cohorts for Internalizing Symptoms and Language. The aim of the Survey Online Cohorts for Internalizing Symptoms and Language studies was to triangulate social media data with self-reported mental health status. In this manuscript, we focused on the latter source of data. The participants were sampled from two distinct sources: (1) a national Qualtrics panel of Twitter users (study 1) and (2) a psychology student pool at a large Midwestern university in the United States, the participants from which received credit for participation (study 2). In both studies, the participants completed a battery of questionnaires entirely on the web. Our inclusion criteria consisted of passing reCAPTCHA and affirming “Yes” to the question, “I will provide my best answers.” After excluding the individuals who could not pass the reCAPTCHA or did not commit to providing truthful answers, a total of 3460 participants responded to our surveys. Although the procedural elements and questionnaires completed by the participants were nearly identical, we have first presented the nationally representative sample of Qualtrics participants (study 1) and then presented the college student sample (study 2). Data were collected between July 2020 and April 2022. Additional data collection is ongoing for facets of a larger project unrelated to this study.The demographic information of the participants of studies 1 and 2 is presented in DSM)–5th Edition  disorder?” Response options were as follows: (1) “Yes”; (2) “No, but I should be”; (3) “I don’t know”; and (4) “No.”The data were analyzed using R Studio . For each diagnosis  we conducted an ANOVA test to determine whether the disorder-specific severity questionnaire scores were different among the 4 diagnostic groups . We used Tukey post hoc tests to determine whether the differences in means between the groups were statistically significant.In If the disorder-specific severity questionnaire scores of individuals were “accurate” or consistent with their reported diagnostic status , we expected that the individuals who had not received a diagnosis would have lower mean scores than (1) those who had a diagnosis (“Yes”) and (2) those who said that they had no diagnosis but that they should be diagnosed  and expected 3) that the “Yes” group and the “No, but I should be” group would be roughly comparable.P<.05) in questionnaire scores between the individuals who had been previously diagnosed by a clinician and those who believed that they should be diagnosed. We were expecting the individuals who selected “Yes” and those who selected “No, but I should be” to present similar scores, but, instead, the individuals who reported they had a diagnosis had higher questionnaire scores, indicting greater disorder severity. The ASRM appears to be a poor measurement tool for the self-diagnosis of bipolar disorder: it did not differentiate the individuals who had been diagnosed from those who had not. However, when using the PHQ-9 to assess the depressive symptoms in bipolar disorder, the scores on the PHQ-9 were different in the expected directions between the groups.For most conditions assessed, the results were consistent with our expectations, indicating that the mean disorder-specific severity questionnaire scores for the four diagnostic conditions—(1) “Yes”; (2) “No, but I should be”; (3) “I don’t know”; and (4) “No”—were different between the groups. For self-reported mania, somatic symptom disorder, and alcohol use disorder, the pattern of mean differences did not suggest that the individuals were accurate in their assessment. However, as indicated by ANOVAs and post hoc Tukey tests, for social anxiety disorder, panic disorder, alcohol use disorder, substance use disorder, and bipolar disorder, there were significant differences  “Yes”; (2) “No, but I should be”; (3) “I don’t know”; and (4) “No”—were different between the groups. Upon further investigation with post hoc Tukey tests, there were no differences in disorder-specific severity questionnaire scores between the individuals who had been previously diagnosed by a clinician and those who believed that they should be diagnosed with insomnia, somatic symptom disorder, social anxiety disorder, panic disorder, or GAD. There were significant differences between previously diagnosed individuals and those who believed that they should be diagnosed with depression, GAD, or alcohol use disorder. Here, the depression and alcohol use scores were actually higher in the group of people who believed that they should be diagnosed, potentially indicating stigma around reporting to a professional or difficulty accessing care. Of note, a smaller portion of our sample in study 2 completed the ASRM, as it was removed partway through the study owing to its poor ability to capture self-reported mania. The ASRM appeared to poorly capture the differences in mania symptoms among the individuals who have been diagnosed, those who believed that they should be diagnosed, and those who were not been diagnosed, suggesting that a self-report assessment of mania may not be a good barometer of bipolar-spectrum psychopathology in college students. However, the PHQ-9 was able to detect differences among the groups in the expected directions for bipolar disorder.This study investigated the scores on self-reported disorder-specific severity questionnaires of individuals who indicated that they had been previously diagnosed (“Yes”), believed that they should be diagnosed , were unsure (“I don’t know”), and had never been diagnosed (“No”) across a variety of internalizing and externalizing disorders. Given the misdiagnosis, underdetection, and stigma associated with mental disorders, this study was a novel way to explore the “accuracy” of self-diagnosis in a national survey panel and a sample of college students. Overall, the results indicate that people who say they have been diagnosed with a disorder have the highest severity scores in general, but this is closely followed by individuals who have not been diagnosed but believe that they should be. This is especially true for clinical conditions that are relatively nonspecific and whose names are relatively descriptive such as depression, generalized anxiety, and insomnia. The results suggest that self-reported mania questionnaires do not align with reported diagnoses, which is consistent with prior studies -35, althAlthough study 2 consisted of college students in the Midwestern United States, which was a relatively homogeneous population in terms of age and ethnicity, our national sample (study 1) was more variable in age, ethnicity, and other demographic characteristics, including age and gender. Our national sample from study 1 also reported more severe psychopathology. The differences between our samples, with college students being slightly more accurate in self-diagnosis, yield additional support for the validity of university samples, which are often criticized for lacking generalizability . InitialOverall, our hypotheses were supported. Our findings showed that self-diagnosis is accurate for internalizing disorders, meaning that most individuals with disorders such as major depression and GAD can accurately detect that their symptoms are significant, even if they have not received a formal diagnosis. Our findings also reveal that self-reported diagnoses are more accurate for more commonly occurring conditions; for example, depression and GAD showed high accuracy in self-diagnosis, but they are also among the most common mental disorders ,43, unliInterestingly, consistent with prior work, the participants in both samples showed poor abilities in detecting mania symptoms via self-report compared with diagnoses from professionals. We acknowledge this is not the first study to find that mania is more difficult to detect than depressive symptoms in a self-report form . It is lAlcohol and substance use disorders followed bipolar disorder in terms of lowest self-diagnosis accuracy. We offer several explanations for this finding. First, in college students, alcohol consumption, particularly binge drinking, is much more prevalent than in the general public ,48, and DSM hierarchy rules, and rule-outs that clinicians would be aware of but patients may not be aware of. Third, it is possible that in our study, the participants appeared to be good at yielding accuracy in the self-diagnoses of some disorders such as social anxiety disorder, but this is a reflection of the measure being highly sensitive but not specific. Further testing of the DSM severity measures in a wide variety of samples is warranted before their extended use.Despite the strengths of our study, including its novelty and the use of 2 large samples, it is not without its limitations. First, we did not have clinicians interview the participants to assess their disorders at the time of the study. The reported disorders were based on prior clinical diagnoses and relied on participants’ honesty and awareness of their mental health conditions. Moreover, we did not include an assessment of all disorders, including those that may resemble mood disorders early in their course, including psychotic disorders, personality disorders, and medical or substance-induced disorders, as we focused most thoroughly on the internalizing spectrum. Future research should consider assessing the full spectrum of psychopathology. In addition, we note that the timeline of disorder onset is not clear from our questionnaires. Some participants may have received their diagnoses years before the current assessment period, and our questionnaires asked about their symptoms within the last week or 2 weeks. Second, differential diagnosis was nearly impossible in our sample, given the wide variety of disorders and lack of clinical reports. This means that the participants may have appeared to have a higher degree of psychopathology than was truly representative, given their diagnostic comorbidities, Our results support ongoing and future research that uses patient self-report of symptoms, diagnoses, and disorders on a more solid footing. In particular, for some conditions of common mental disorders such as depression, anxiety, and insomnia, relying on textual reports may not bias samples, at least in terms of symptom severity: when individuals say that they struggle with a problem, they in fact seem to do so. The next steps of this research involve examining these results in conjunction with relevant features of individuals’ social media accounts, including sentiment analyses, text analysis of themes associated with internalizing disorders, and other computational informatics analyses of social media data. Indeed, we have previously shown that individuals who self-disclose depression diagnoses use more cognitive distortions , have di


The World Malaria Report, released in December 2021, reflects the unique challenges currently facing the global malaria community. The report showed the devastating toll of malaria, with an estimated 627,000 people losing their lives to the disease in 2020. The improved methodological approach used for calculating cause of death for young children revealed a systematic underestimation of disease burden over the past two decades; and that Africa has an even greater malaria crisis than previously known. While countries were able to prevent the worst-case scenarios, the disruptions due to the COVID-19 pandemic revealed how weak health systems and inadequate financing can limit the capacity of the continent to address the malaria challenge. African countries also face a convergence of biological threats that could redefine malaria control, notably widespread pyrethroid resistance and emerging resistance to artemisinin. Despite these challenges, there is cause for optimism in lessons learned from the COVID-19 pandemic, recent acceleration of cutting edge research and development, and new partnerships that encourage leadership from and ownership by affected countries. This article presents key insights from the 2021 World Malaria Report and reflections on the future trajectories: it was informed by an in-depth discussion with leading malaria experts from the World Health Organization (WHO), the Bill & Melinda Gates Foundation, and the U.S. President’s Malaria Initiative (PMI). The discussion took place during the 34th edition of the Ifakara Master Classes, held virtually on December 15th, 2021. On December 15th, 2021, the 34th edition of the Ifakara Master Classes featured an in-depth discussion on the 2021 World Malaria Report (WMR), released a week earlier [The discussion, which lasted 2 h and 45 min in total, was organized and facilitated by MasterClass hosts Drs. Fredros Okumu  and Sheila Ogoma , and guest hosts, Drs. Corine Karema  and Nana Aba Williams . The session began with a brief overview of the 2021 WMR by Dr. Noor, followed by a series of open-ended technical questions posed by the facilitators to the panel of experts about specific aspects of the WMR. The discussion was hosted on Zoom with 320 live participants from the global malaria community, and was live-streamed on YouTube.A consolidated account of insights and lessons learned from the discussion is presented here. Findings are organized around topics identified a priori by the Master Class facilitators and key themes that emerged through the discussion.“A growing number of countries with low burden are moving steadily toward elimination, while countries with the highest burden are struggling.” –Dr. NoorThe World Malaria Report, released December 2021, reflects the unique challenges facing the global malaria community. The report lays bare the devastating toll of malaria, with an estimated 627,000 people losing their lives to the disease in 2020. The numbers in the report tell two different stories for countries nearing elimination and countries experiencing high burden.Eleven countries now experience 70% of the world’s malaria burden while 47 now report fewer than 10,000 cases per year. Even before the COVID-19 pandemic, gains against malaria were leveling off, leading to the role out of the High burden, High impact response in 2018 [A new statistical method is being used by the WHO, which provides more precise cause-of-death estimates for young children for all diseases, including malaria. In the revised approach, the proportion of childhood deaths attributable to malaria was 7.8%, up from previous estimates of 4.8% , 4. The The WMR has gotten clearer, and the quality improved consistently since it was first released. However, for most countries, the WHO still relies on modelled estimates derived from verbal autopsies to calculate all-cause mortality and the cause of death fraction for children under-5 to quantify malaria deaths in this age-group before applying a second adjustment to quantify deaths in older children and adults. There is a strong case for improving surveillance as an intervention and investing more heavily in information systems as recommended in the WHO Global Technical Strategy (GTS) 2016–2030 [In addition to increases due to the methodological changes, the COVID-19 pandemic posed significant challenges, and was associated with ~ 47,000 of the ~ 69,000 extra deaths reported in 2020 relative to 2019, ; these m“The situation remains precarious, particularly in sub-Saharan Africa where burden remains unacceptably high and a convergence of threats pose added challenges to disease control efforts…Without immediate accelerated action, key 2030 targets of the WHO Global Technical Strategy [Strategy  for malaA range of challenges from biological threats, to preventing severe disease and death in the most remote areas, to fragile and insufficient malaria funding must be addressed to sustain progress.pfhrp2/3 gene deletions  [Anopheles stephensi in the Horn of Africa [While the epidemiology of malaria in Africa is already more challenging and precarious than elsewhere, the situation is compounded by multiple biological and civil threats. Over 122 million people in 21 malaria-endemic countries needed assistance due to health and humanitarian emergencies in 2020–2021 including Ebola outbreaks, armed conflicts, and flooding. Key biological threats in sub-Saharan Africa include anti-malarial drug resistance in the eastern Africa region –11, threresults) , resistaresults) , 15, andf Africa –18. All pfhrp2/3 gene deletions, there are already new tests, albeit more expensive, which are prequalified by the WHO that can detect these parasites [A. stephensi as an efficient malaria vector in urban settings [The WHO is tracking biological threats using the WHO threats map . For pfharasites . Increasarasites . The WHOsettings , and affsettings , 24.Of particular concern is emerging signs of resistance to artemisinin, which is the backbone of current malaria treatment efforts in Africa –11. Now “…This is a Catch 22… if we try to build our health systems to reach the people furthest out, and at the greatest risk, using our least trained, least supplied workers, the system is then going to have to deal with severe malaria because we weren’t able to prevent it in the first place...the question is, how do we take the community outreach, and community health workers on the periphery, and make sure they’re sufficient in scale, have the right skills, and that they are adequately supervised and supplied?” –Dr. SteketeeCombatting severe malaria is paramount for averting malaria deaths and depends on systems that support prompt treatment, referral for severe disease, and a full course of treatment to clear infection. However, the most severe malaria cases and deaths are often concentrated in areas where health systems are weakest, where prevention practices are most inadequate, and care workers least trained. Effective community-based approaches, particularly training and appropriately compensating community health workers will be key to reaching the unreached and preventing severe disease.“When you think about what’s stalled, population growth has not stalled, and that will continue, what’s stalled is the money. We’ve been working on efficiencies but there are limits to what we can achieve with efficiency alone.” –Dr. SteketeeA consistent feature of global malaria programmes is that less than half of the necessary annual budget is actually available. A total of $3.3 billion was invested in 2020, compared to target of $6.8 billion. Moreover, to reach global targets, investments will need to increase by more than three times by 2030 to 10.3 billion per year. The current system relies on just a small number of major funders and budget needs are unlikely to be met even if these few sources increase their contributions. Further, the relative investment of countries has not increased despite economic growth.“It has not sunk in that we need to do something drastically different. It is a mindset problem, we need to show greater flexibility, and understand we are facing a very complex problem…malaria is a problem to be solved, not simply a task to be performed.” –Dr. AlonsoThe malaria situation cannot be effectively tackled using current practices, highlighting the need for a more transformational approach, tailored to different epidemiological contexts. A drastic change in mindset is needed around the disease and its complexities.“It was really heartening to see that when there’s an emergency, we can work effectively across stakeholders to mount an effective response. COVID19 responses have also demonstrated to Ministries of Health that data matters – high-quality real-time data matters.” –Dr. GardyThere are important opportunities to learn from the COVID-19 pandemic. The pandemic brought the global malaria community together in a way not previously seen, to ensure a buffer against service delivery disruptions.“...We’ve seen that things like a massive investment in de-risking multiple aspects of the vaccine production pipeline meant that you could very quickly get new products authorized, under Emergency Use Authorizations, and then eventually under full approval for use. We also saw the culmination of decades of work on mRNA vaccines…it’s working better than what we could have imagined. To hear that there’s now an mRNA pipeline for malaria vaccines is very exciting.” –Dr. GardyThe pandemic has also shown that molecular data can provide important information on current and evolving trends over time, and that mathematical models can be valuable for exploring different intervention scenarios, an approach that is now also being utilized in the WHO-backed High burden, High impact response . Perhaps“COVID-19 may provide an opportunity – when countries in the global north have felt threatened there’s no limit to the money they spend – building on this momentum is a great opportunity to put the health agenda up front. Strengthening health systems is a key issue in the fight against malaria, it may not be considered malaria money, but is key to getting the commodities out.” –Dr. AlonsoInnovative financing mechanisms will be needed moving forward to ensure sufficient and sustained funding. Resource mobilization seen during the COVID-19 pandemic shows when can be done when a disease is viewed as a global threat.Plasmodium falciparum transmission. In addition to the modest efficacy demonstrated in earlier clinical trials [In 2021, the RTS,S malaria vaccine became the first to be approved for widespread use; and the only vaccine currently available for any human malaria parasites. The vaccine is now recommended for children living in areas with moderate to high l trials , 27 and l trials , data frl trials . When pr“…Putting one tool against another is really unhelpful, it’s bad public health…We have an armamentarium, we have a set of tools, and we need to look at what’s best in a particular circumstance….” –Dr. AlonsoIt will be critical to think comprehensively about malaria control, including the vaccine, to ensure context-appropriate packages of interventions.“RTS,S forces the malaria community to work with other departments of the ministry of health that are the custodians of the delivery platforms, such as EPI. Therefore, an added benefit of RTS,S is that it will force the malaria community to come out from a siloed space.” –Dr. AlonsoDuring the evaluation of RTS,S there was a strong partnership between African scientists, the WHO, and several other players working jointly. For example, the Phase III trials were done in 11 different sites across nine African countries , 27, and“The more we can figure out how to work together on delivery platforms, the more we can see benefits across the board and use the limited (funding) envelope more effectively.” –Dr. GardyWorking across disease portfolios can also maximize efficiencies in health systems.“If a country has the data to show an area would benefit from a fifth round of seasonal malaria chemoprevention, who is anyone on this planet to tell them no? We need to break those attitudes, the lack of empowerment to countries, that lack of evidence-based decision making – only then will we be able to make progress.” –Dr. AlonsoFinally, the future of malaria control will require moving toward country-led, unified visions and funding strategies. This includes ensuring evidence-based decisions and centering affected countries in those decisions.“Let’s get everyone at the table with one single plan, costed, that we all help develop and that we can all invest in. This is truly a partnership.” –Dr. SteketeeThere must also be a more coordinated response from different partners working within countries and a united strategy. This includes movement toward a single national strategic plan, that is costed properly and against which the investments from inside and outside of the country are aligned to achieve the agreed programme goals.The global malaria community is at an inflection point; progress has levelled off and multiple threats confront countries already hardest hit by the disease. A shift in mindset is urgently needed with truly innovative and collaborative approaches to malaria control. Reflecting on the 2021 WMR and its implications for the future, there is a critical opportunity to take-up lessons learned from the COVID-19 pandemic, including what is possible when the world comes together towards a common goal. Cutting edge research and development, as was seen in recent vaccine development, and improved surveillance, can pave the way to more transformational approaches. Finally, and most importantly, the future of malaria control must be led by affected countries, with unified and coordinated support from donors and partners.