Internet support groups enable users to provide peer support by exchanging knowledge about and experiences in coping with their illness. Several studies exploring the benefits of internet support groups for depression have found positive effects on recovery-oriented values, including empowerment. However, to date, little attention has been paid to user narratives.This study aims to capture the user perspective on an online peer support community for depression with a focus on the modes of user engagement and the benefits users derive from participation in the forum.In this qualitative study, we conducted 15 semistructured interviews with users of Depression Connect, a newly developed online peer support community for individuals with depression. Combining a concept-driven and a data-driven approach, we aimed to gain insight into what users value in our Depression Connect platform and whether and how the platform promotes empowerment. We performed a thematic analysis to explore the merits and demerits reported by users by using theoretical concepts widely used in internet support group research. In the subsequent data-driven analysis, we sought to understand the relationship between different styles of user engagement and the participants’ experiences with the use of Depression Connect. Data analysis consisted of open, axial, and selective coding. To include as diverse perspectives as possible, we opted for purposive sampling. To verify and validate the (interim) results, we included negative cases and performed member checks.We found participation in Depression Connect contributes to a sense of belonging, emotional growth, self-efficacy, and empowerment. “Getting too caught up” was the most frequently reported negative aspect of using Depression Connect. The deployment and development of three participation styles  affected the perceived benefits of Depression Connect use differentially, where the latter style was central to enhancing empowerment. “Being of value to others” boosted the users’ belief in their personal strength. Finally, Depression Connect was predominantly used to supplement offline support and care for depression, and it mainly served as a safe environment where members could freely reflect on their coping mechanisms for depression and exchange and practice coping strategies.Our findings shed new light on user engagement processes on which internet support groups rely. The online community primarily served as a virtual meeting place to practice  skills for deployment in the offline world. It also allowed the members to learn from each other’s knowledge and experiences and explore newly gained insights and coping skills. The increased accessibility of the internet, together with the advantages of offline peer support -3, has bThere has been much focus on the efficacy of ISGs for depression, with previous research examining clinical outcomes and providing compelling but inconclusive evidence for a reduction of depressive symptoms resulting from the engagement in mental health ISGs (MHISGs) ,10 or deRecent RCTs on MHISGs indicate that high user engagement quantified in terms of the number of posts  or loginempowerment in the context of patients with chronic illnesses such as depression: “an enabling process whereby health care professionals collaborate with patients to help them acquire knowledge and resources and whose outcome is a patient with greater ability to exercise control, manage his/her condition and to make informed decisions,” precluding peer-to-peer empowerment. Empowerment is a multifaceted concept .” So yes, I have to admit, reading such posts can be an incentive. Also, certain books that people mention can make me curious, prompting me to look for more information. But it depends on how people write about things. When they share information about coping strategies, I “cherry-pick” the things that suit me most.P8, female, 61 yearsBesides increasing their sense of self-efficacy or, more specifically, autonomy, the data suggest that participating in the online community empowered most participants to come to terms with and manage their depression, with three-fourths  of our participants describing Depression Connect as a tool to provide meaning to their experiences. They explained that being of value to others living with depression and supporting peers through sharing their own experiences, provided them with a (great) sense of fulfillment:What I try to convey is: Maybe you don’t have any perspective now, I understand, I felt the same: “What am I doing here, on this planet?” But it will pass, really, it will pass. Even when the response is just a “thank you,” it gives me fulfillment.P8, female, 61 yearsfinally afforded them a positive and valuable experience. This seems to enhance the belief in their own strength:After all the problems they were facing because of their depression, the users felt that participating in Depression Connect You don’t get stuck in fear. For example, when you have anxieties or feel depressed, you can feel helpless, you feel lost. When you read messages of your peers saying, “It will pass,” it’s like, “Yes, it will.” This way you encourage yourself to adopt a different attitude toward depression. And, as a consequence, when you get to feel more in balance, you can support others too.P10, male, 62 yearsConsistent with their missing a genuine sense of connectedness with their Depression Connect peers, 2 participants (both negative cases) did not report deriving fulfillment from being of value to others.To determine how and why Depression Connect users rated the merits of forum participation, we analyzed the interaction and synergy between their participation styles and valuations. The data  coping skills in their daily lives, which enhanced their sense of self-efficacy.In general, posting played a significant and positive role in the appreciation of the forum. Writing down their feelings and struggles in managing their depression often offered users relief, whereas peer recognition and understanding or merely the knowledge that their posts were read by others was of (great) value to Depression Connect users, contributing to their development of a sense of belonging:The online community serves as a “lifeline” for me. Several times, when I was really struggling, I posted a message on DC [Depression Connect]. Not to get a response, but primarily to be able to express myself by writing down my feelings. I also write for myself, to give words to my emotions. However, writing on the forum differs because I know my posts are being read. Actually, most of the time, people even respond. It’s mainly the recognition they articulate that affects me, in a positive sense. Which in itself is quite strange because the recognition of others doesn’t essentially change how I feel. But apparently, it works. In the sense that it sort of works as a “lifeline.” A couple of times when I was doing terrible in the morning and I posted something, it was the responses of others that helped me get through the day.P3, male, 48 yearsMoreover, participants explained that sharing their personal story was healing. They managed to organize their thoughts when writing, often reinforcing self-reflection and emotional growth:Writing about my emotions gives me peace of mind. The negative feelings don’t disappear completely, but I’m better able to dissociate myself from my problems. What I get from when other users respond to my post is a sense of “not being alone in this world.” More people are struggling with these same problems, who even try to help others. … It helps me put things into perspective, makes my problems feel less overwhelming.P4, male, 31 yearsFinally, posting specific questions about coping with depression often prompted practical tips and other new information, which is likely to have fostered a (greater) sense of self-efficacy.Users responding to others’ posts derived emotional support and recognition from their peers, which strengthened their sense of belonging. Since providing support or advice entailed having to write down one’s thoughts and thus reflect on one’s own experiences, this interactive participation style seemed to promote emotional growth. Similar to posting, communicating with peers helped users to better organize and formulate their thoughts:Yes, yes, and I think that’s exactly what the online community contributes: learning to think about, learning to reflect on yourself in other, somewhat different contexts. The things you're saying to the other are actually the things that you would like to say to yourself at that moment. Yes, and maybe that’s precisely what you do, unconsciously? When you're able to sort of put yourself in the emotional world of another, then you actually feel how good it is to connect with your own emotions. This is when I realize that that is the ultimate goal.P2, male, 65 yearsMoreover, responding and helping peers raised the users’ sense of fulfillment, which fostered a greater sense of empowerment because they felt they were of value to others.As to the negative aspects of Depression Connect use, these are best captured under the notion “getting too caught up.” Participants explained they could become overwhelmed by the sheer volume of information appearing on the online community, the pressure of having to be continuously available and the stress caused by the concerns they had about the worries of their peers:Well, you can feel overwhelmed by it all. I had mixed feelings. On the one hand, I felt relief because I could share my experiences. But on the other hand – since I visited DC [Depression Connect] a few times a day, and partly because of all the notifications I received, all the new posts – I thought, “This is not good. I’m too preoccupied with the forum and worry too much about others right now.”P8, female, 61 yearsUsers also did not appreciate the forum when their messages appeared to be misinterpreted or when they received unsolicited advice. Although, as mentioned above, half of the participants valued the practical tips on coping with depression, the other half could get frustrated because they felt they were “already aware” of the recommended strategies, or it aggravated their self-criticism because they failed to engage in the suggested activities:In itself, it was good advice, definitely well-intentioned. Also, the content was completely accurate, but I was unable to follow up on it. I felt frustrated because I agreed and knew it was sane advice, it would be the sensible thing to do, but I just couldn’t.P3, male, 48 yearsMoreover, participants reported that some members confused their own experiences and emotional needs with the personal and unique needs of peers, resulting in useless feedback and a general sense of lack of support.In general, the participants characterized the use of the online community as being complementary to their real-life peer contacts, their social network, and any professional care or treatment. As they did not feel judged by their Depression Connect peers, the participants referred to the online community as “an emotionally safe context.” Not wanting to (over)burden their family and friends with their troubles, initially sharing feelings and receiving peer support online was helpful to some degree:It’s about the feelings you share; we’re all struggling with depression. It’s different from friends of mine who also suffered from depression and are the most approachable people in my network, where I sometimes think, “I don’t want to bother them with my complaints again.” This is much more anonymous. It is voluntary, which is nice because a friend can try to be too supportive and say, “I’ll come and see you tomorrow,” where I think “You don’t have to come, I only felt like sharing my thoughts because I was having a bad day.” Obviously, things like that don’t happen in an online community like this.P12, female, 47 yearsAt a later stage, Depression Connect interactions served as an exercise for self-disclosure in the offline world. Furthermore, anonymous participation, the voluntary nature of Depression Connect engagement, and its 24/7 availability were also mentioned as distinctive positive features compared to seeking or receiving face-to-face support via social networks or from mental health professionals:The fact that you can log on day and night, that’s its great strength. As opposed to my psychiatrist, whom I can’t email in the middle of the night. I mean, I can, but there’s no response.P9, female, 42 yearsThe overarching principle in the relationship between the use of Depression Connect and other forms of support for depression appeared to be the opportunity the forum offered to reflect on and practice the  skills the users were trying to master in their daily lives or through psychotherapy. Specifically, discussing topics concerning social interactions and behavioral patterns with peers were considered beneficial:I see the online community as a stepping stone for real-life social interactions with others. I learn by writing down how I should respond, how others might respond. So I’m practicing and learning. Also, I’m learning to become more self-confident so that I can connect better with others.P4, male, 31 yearsWhen I’m doing schema therapy with my therapist, difficult issues come to light. I found it helpful to write about these difficulties. It allows me to reflect a bit more on them, and on top of that, I can get some advice.P9, female, 42 yearsIn light of the promising evidence for depression ISGs ,11,63,64responding played a key role in empowering users, and being valuable to others boosted their belief in their own abilities . Primarily, the participants used the forum to explore and try (new) coping and social skills for later use in their real lives. The central drawback of Depression Connect use was that some users had become too involved in the community, getting overwhelmed by the continuous supply of posts and messages and their empathy for their fellow users. Finally, they noted that the Depression Connect community had provided them with an emotionally safe context to reach out to others in addition to their seeking or receiving face-to-face support and professional care.Participation in the online community engendered a sense of belonging and promoted the users’ emotional growth and sense of self-efficacy and empowerment, with self-efficacy and empowerment boosting their sense of autonomy. Where improved empowerment mainly pertained to interactional and behavioral constructs ,49, suchOne definition of empowerment in the context of this study reads “health care professionals collaborating with patients to help them acquire knowledge and resources” , which iConsidering empowerment is a process rather than a mere outcome ,49, we fThe benefits the Depression Connect users we interviewed derived from the forum are consistent with findings of other studies: informational and emotional support ,12,14-17Moreover, the development of and variations in participation styles over time contributed to user satisfaction. After a passive start, users gained more confidence from reading others’ posts and responses and became more (inter)active themselves, making the shift from reading only to asking for help, sharing experiences, and finally helping others. Posting and responding brought gratification, boosting the way they thought about themselves, adding to their self-confidence, which Schwartz termed the “response shift effect in peer support” . NeverthIn addition to the development of and flexibility in user engagement over time, our data suggest a direct association between participation styles and the perceived value of Depression Connect as an online community, which expands the findings on depression ISG research . We founIn their systematic review, Leamy et al  pose thaDepression Connect users we interviewed may not be representative of all Depression Connect members; apart from the 2 negative cases, most participants were probably among the more frequent users because they were the more likely to come across the invitation for participation we posted. Furthermore, because the interviews were conducted during the COVID-19 pandemic when face-to-face contact was restricted, the importance of online types of support for depression increased, potentially causing the results to be biased in a positive direction.The high accessibility  of the Depression Connect platform, the encouraging but nondirective role of its moderators, and its structural embedding in both a patient and mental health organization may have fostered social and interactive processes  that may not be representative of other ISGs that are less closely monitored . MoreoveIn a quantitative parallel study, we are in the process of evaluating the effects of Depression Connect use on empowerment (primary outcome measure) after 3 and 6 months. Further longitudinal research should be aimed at the longer-term beneficial and adverse effects of participation in ISGs.A mixed-method effectiveness study should address the complexity and potential of peer support interventions. The method can yield rich and comprehensive data and thus provide a more holistic view on how people cope with depression. In this context, examining the perceived level of social support in daily life in relation to user statistics of online peer support services will be informative. Finally, a key challenge is to determine whether skills learned from peers in online networks also contribute to mental health recovery in the offline world .Users of Depression Connect considered the online peer support community an accessible and valuable tool for learning to cope (better) with their depression. Seeking to understand the working mechanisms of ISGs, we found that the greater majority of the study participants benefited from the freedom and flexibility Depression Connect offered, allowing them to employ passive, active, and interactive styles of user engagement depending on their current mood and needs. Most found the forum, monitored by experienced peers, a safe environment to practice social and coping skills for later deployment in the offline world, supplementing formal and informal care. We found that besides promoting intrapersonal empowerment, Depression Connect also fostered interactional empowerment. Provided platforms are closely monitored and used to complement or follow-up formal care, and pending further investigations, we suggest that online peer support may be recommended as a safe context for exchanging knowledge and experiences on how to cope with depression and practice newly gained insights and skills.


The Coronavirus Disease 2019 (COVID-19) is an emerging disease with many unknown clinical and therapeutic dimensions. Patients with COVID-19 experience a variety of psychological problems during the disease. Understanding patients’ mental condition and their distress during the disease is the first step to help these patients. So, the aim of this study was to explain COVID-19 patients’ experiences of psychological distress during the disease course.The present qualitative research was conducted in Iran from April 2020 to April 2021 using the conventional content analysis method. The participants included patients with COVID-19, selected by the purposeful sampling method. Data was collected through 34 telephone and in-person interviews and analyzed based on the method proposed by Lundman and Graneheim.Qualitative data analysis led to the emergence of sources of psychological distress as the main theme as well as seven categories and seven sub-categories. The categories were the disease’s nature , the anxiety caused by preventive behaviors , the inefficient management by the health system , death anxiety, stigma, anxiety after recovery, and sleep pattern disturbance.Patients with COVID-19 experience great psychological distress during the acute phase of the disease or even long after recovery. It is suggested that psychological and spiritual counseling, as a key element of treatment and support for these patients, is provided to patients in the acute phase of the disease, as well as after recovery. National and local media should boost awareness about the disease as a dangerous yet preventable and curable infectious disease. People should follow health instructions and leave their seeing the disease as a taboo.Not applicable. The Coronavirus Disease 2019 (COVID-19), as an emerging infectious disease, was first reported on December 31, 2019, in Wuhan, China . Until ASimilar to other parts of the world, Iran has been suffering from the COVID-19 disease for over a year and has experienced four waves of the disease so far. Until April 14, 2021, the number of patients with COVID-19 in the country had reached 2,143,794 cases, claiming 65,359 lives [The results of studies on patients with COVID-19 indicate that, in addition to physical symptoms, they may experience various mental health problems –10. The Psychological distress can play an important role in determining the severity and recurrence of acute respiratory infections . StressfThese problems should be divulged and explained by patients themselves in order to identify the type of psychological problems and their root causes and also explain the signs and condition of patients during the disease. A complete understanding of these patients’ psychological and mental problems can help take appropriate decisions to manage their psychological distress and provide them with appropriate care services.One of the proper ways to understand patients’ psychological distresses is to interview them, which is achievable through qualitative interviews. Given the expertise of the authors in conducting qualitative research and their engagement in providing care to COVID-19 patients, this study was performed to explore COVID-19 patients’ experiences of psychological distress during the disease course.This qualitative study was conducted according to the conventional content analysis approach.Study participants included the patients contracting the COVID-19 disease amid the pandemic, who were recruited by the purposeful sampling method. Inclusion criteria were the confirmed diagnosis of COVID-19 disease based on RT-PCR, passing at least 2 weeks from the diagnosis, experiencing the clinical symptoms of the COVID-19 disease, referral to health care centers and receiving outpatient or inpatient care, and willingness to participate in the study. Exclusion criteria included inability or unwillingness to participate in the study.Considering the immediate need for the data to improve the patient care process and due to limitations in conducting face-to-face interviews during different waves of the disease in Iran (four waves), the data was collected via semi-structured in-depth telephone or face-to-face interviews from April 1, 2020 to the end of March 2021. Patients with a positive PCR test and a history of hospitalization were identified by referring to the infection control offices of hospitals. The outpatients seeking health services were also identified by visiting clinics and physician offices. By referring to the staff providing health care to these patients , the patients who had rich information relevant to the purpose of the study were purposefully selected. After the patients were approved by the doctors and nurses who provided health care to them, they were contacted via phone calls, and if they were found to be eligible and available to participate in the study, the time and place of the interview were scheduled. The first, second, and third authors conducted the interviews and then transcribed them. After explaining the goals of the study and obtaining informed consent, the duration of the interview was determined based on the desire, patience, and richness of the participant’s experiences. Face-to-face interviews were conducted according to the participants’ preferences in either medical centers, patients’ homes, or a quiet and comfortable place. All the interviews were recorded using an electronic device. The main question of the study was: “Could you please talk about your COVID-19 experience?” and “Could you please share with us your psychological status during the disease?”. Then based on the participant’s responses, more detailed questions such as “Could you please share an experience?”, “What do you mean?”, and “Could you please explain more about this?” were asked.All authors participated in data analysis. The initial analysis was conducted by the corresponding author, and then other authors took part in correcting, entitling, and finalizing categories and subcategories. A final consensus was made on the categories and subcategories. Data analysis was conducted based on the Lundman and Graneheim approach , who sugAccordingly, data analysis was conducted inductively. The data gathered was analyzed simultaneously with the interviews. For this, the interviews were immediately transcribed verbatim, and the written data were read for several times to arrive at a general understanding of their content. The initial codes were extracted from the data. A thorough interview transcript was regarded as the unit of analysis, and meaning units included words, sentences, and paragraphs. The initial codes were compared with each other to merge related ones and form categories and subcategories based on their similarities and differences. The categories were also compared with each other and grouped into higher-level main theme.The accuracy and reliability of the data were determined based on the method proposed by Lincoln and Guba . The criThe prolonged  engagement of authors with the data helped to achieve credibility. For further confirming data credibility, a peer-debriefing session was held with two faculty members who were experts in qualitative research methods and agreed on the extracted codes and their classification. Member-checking was done after extracting the initial codes, and the accuracy of the extracted codes was confirmed according to the participants’ viewpoints. In the case of any inconsistency with the participants’ comments, the corrections required were considered. The participants had the maximum diversity for age, sex, and level of education, which could have helped boosting data credibility.For data transparency, the authors tried to write the manuscript with sufficient details. For dependability, the processes of studying and interpreting the data were supervised by a scientific committee.All methods were performed in accordance with the relevant guidelines and regulations by in the declaration of Helsinki . The aims and methods of the study were explained for all participants, and necessary assurance was given to them for the anonymity and confidentiality of their information and audio files. Informed consent  was obtained from participants. The interviewers were reading text of informed consent form verbatim for illiterate participants and obtained informed consent of them. And also, informed consent was obtained from parent or legal guardian for illiterate participants. The participants had the right to withdraw during the study or at any other time. The Ethics Committee of Lorestan University of Medical Sciences approved the study protocol .Overall, 34 patients with COVID-19, including 17 (50%) females and 17 (50%) males, participated in this study. The participants’ mean age was 49.79 ± 15.03 years, and 24 of them were married. The data were collected through 14 face-to-face interviews and 20 phone interviews , anxiety related to preventive behaviors , inefficient management by the health system , death anxiety, stigma, anxiety after recovery, and sleep pattern disturbance.The condition created by the COVID-19 in the community has brought fear and distress among patients. In fact, the lack of preventive measures and definitive treatments, the increasing rate of the infection across the community, numerous mutations, the high mortality rate, and also a bad view towards the patients by the society have caused distress among the patients. Within this category, there were the subcategories of the disease’s unknown dimensions, and disease severity.The COVID-19 is an emerging disease whose many dimensions in terms of prevention and treatment are unknown. Data analysis showed that the disease being unknown, the unpredictability of the patient’s condition, lack of definitive treatments, the growing trend of the disease’s incidence, as well as the occurrence of frequent mutations were sources of fear and anxiety in patients. One of the participants mentioned: “…it was an unpleasant and scary experience. It was something unknown…” (20). Another participant elaborated about the unknown nature of the virus: “… the virus is still unknown …” (22). Explaining the unpredictability of the patient’s outcome, one of the participants noted: “… I was anxious about not knowing what would happen … “(5). Another participant, citing the uncertainty about his fate, said: “…It is not clear whether you regain your health or not …” (24). Another participant explained about being unaware about returning to normal life: “… I do not know exactly what I should do about marital relations…” (1). Data analysis showed that the growing trend of the disease’s incidence, as well as upward trends in mortality rates could cause stress and anxiety in patients. A participant mentioned: “…when I contracted the disease… hearing the high mortality rate made me stressed and aggravated … “(5).Data analysis showed that the high mortality rate of the disease caused anxiety and stress in patients. Regarding this issue, one of the patients elaborated on the fear of the disease’s fatality: “… I assumed that if everyone gets infected, he would die … I would imagine death in front of my own eyes …” (2). Another participant said: “…regarding the invasion of COVID to my body and the inflicted pressure, I must say… you feel it is the end of your life and you cannot return …” (24). This participant continues talking about the disease’s fatality: “…a difficult situation between life and death … there is no hope…even the people who had good conditions and talked to you…. Later on, you realize that they have died…” (24).Data analysis showed that the observance of preventive behaviors by patients with COVID-19 could cause them psychological distress. During the disease, patients should live away from others for a while to stop disease propagation. The observance of health protocols and preventive behaviors by patients and their ignorance by the community can have adverse effects on patients’ psychological well-being. Within this category, there were three subcategories of quarantine, worry about transmitting the infection to others, and obsessive thoughts related to disinfection measures.Patients are psychologically affected during quarantine and loneliness and become irritable and vulnerable. They feel themselves far from the family and see quarantine as the end of life. One of the participants described her bad feeling during quarantine: “…At home and in quarantine, I felt it was the end of my life, and that I was dying … I felt like an extra being… “(1). Another participant mentioned: “ … It was a very bad feeling. I was scared and crying most times … “(32); another participant noted: “…the feeling of loneliness was agonizing and annoying …” (29). One participant, about the bad feeling of being far from the family, stated: “… what I hated was that I was away from the family .... I have not seen my mother for 40 days …” (2). Data analysis also showed that the time passed in quarantine to the further development of psychological disorders. In this regard, one patient expressed: “…my brother developed depression… and now he does not talk to anyone … “(17).Data analysis indicated that among the reasons for patients’ fear and anxiety were their concerns about infecting their families and other members of the community with the COVID-19 causative virus. In this regard, one of the patients said: “… after I realized that my corona test was positive, my greatest anxiety was because of infecting my wife and children…” (31). Another participant, addressing the influence of the fear of infecting others on routine life, mentioned:“.... For example, there was anxiety about going shopping, that if I go, the seller would be affected. .... and if I disclose that I am positive to get the seller alerted, you would create anxiety in that person .... “(28). Also data analysis showed that one of the sources of stress and anxiety in patients was the public not adhering to health guidelines. In this regard, one of the participants noted: “… Yesterday, I had to go out … and I encountered an unpleasant scene… everywhere was crowded, and many did not use face masks and gloves and ignored social distancing …” (15).Data analysis showed that patients had developed obsessive thoughts due to excessive washing of hands, objects, and other materials, as well as excessive use of disinfectants, causing them disturbance and anxiety. On this issue, one of the participants stated: “.... I have not taken a taxi for a long time because I am very afraid of touching money. The obsession about spraying alcohol on everyone and everything…” (20). Another participant said:“…During this time, I considered everything and everyone contaminated and wore gloves outside the home ....” (14).Data analysis showed that patients with the COVID-19 disease need to use the capacity of health care centers. The plans, structure, manpower, as well as equipment of health care centers can affect patients’ psychological well-being. In this category, two subcategories, including poor care conditions, lack of spiritual care, were identified.Data analysis showed that the patient’s care condition can be a source of either comfort or distress. The prevailing atmosphere, the behavior of health staff, number of hospitalized patients in the ward, observing the death of patients, as well as support and encouragement by health staff can influence patients’ psychological conditions. In this regard, one of the participants mentioned the bad behavior of health staff as a stressor and added: “.... I was upset with the behaviors of the hospital’s staff and manager...” (21). Another participant perceived the poor care condition as a source of fear and anxiety: “…the poor care condition deteriorated my spirit…” (2). Data analysis showed that one of the factors that can affect patients’ psychological state was the discipline and cleaning of the hospital environment. In this regard, one of the participants explained about the lack of cleaning of the ward: “… toilets were dirty due to the ignorance of some patients, especially elder ones…” (20). One participant noted: “…pillows and sheets were hardly available. There were patients who were hospitalized for 14 days but had not yet taken a shower ...” (18). Another participant addressed the lack of manpower and its impacts on patients’ spirits: “…nurses could not provide all services to patients because of a shortage in manpower …” (5). Data analysis showed that patients were afraid of referring to hospitals due to the crowded medical centers. One of the participants mentioned the case of his father: “…Unfortunately, my father refused to go to the hospital due to bad news about them, overcrowding, the high mortality rate, conflicts, etc..... he refused to go to the hospital …” (22).One of patients’ care needs is paying attention to the spiritual dimension, which has been neglected in patients with COVID-19, and this can be a source of fear and anxiety. In this regard, one of the participants highlighted inadequate facilities for fulfilling patients’ spiritual needs: “…there was no place for praying in the hospital …” (3). Also, data analysis revealed patients’ needs to talk with religious experts about death and afterlife; one participant elaborated: “…I wanted to talk to someone who was fully aware of afterlife…” (33).Data analysis revealed patients were stressed and anxious of death due to their attachments as well as the unknown nature of death. Some patients were afraid of death because of the loneliness of their families and relatives. In this regard, one of the participants expressed his concerns about leaving his wife alone”: “… I was worried about what would happen to my wife after my death …” (13). Another participant mentioned: “… I am too attached to my little girl and the thought of how she would be after my death made me feel bad and worried … “(6). The patients were horrified by the death due to COVID-19. One of the participants said: “…I think death due to COVID is a strange phenomenon… is death in exile... “(5); another participant about his anxiety stated: “… the shortness of breath made me feel inside a grave, and the image I had about the funeral of COVID patients… being placed into graves by a shovel … pouring lime on them… made me very sad…” (3).The COVID-19 disease is recognized as a social stigma, and patients are reluctant that those around them know about their illness, exaggerating their anxiety and distress. During the course of the disease, patients isolate themselves from the community, and even after recovery, they fear entering the community. On the other hand, some people in the community avoid recovered patients, leading to stress and anxiety in patients. In this regard, one of the participants mentioned: “… COVID has become a disgrace, and whoever has it tries to hide it …” (20). Addressing the bad behavior of those around him, a participant mentioned:“…Sometimes that relatives called …they behaved as if you were impure…” (4). Another participant shared his concerns about neighbors’ becoming aware of his disease: “…this disease has a bad image in the society .... even when health experts came for disinfection two or three times …I told them not to come anymore because it would be a bad image if relatives or neighbors find out…” (1).Data analysis showed that some patients had the stress of being reinfected after recovery. One of the participants mentioned: “.... I am afraid that I may be infected again, and the fact that I am not immune to the disease…. even though I have started my work again, I am always worried about being re-infected … “(17). Another participant noted: “… I am under a lot of stress because of these symptoms and the disease’s recurrence…” (3). Another patient said:“ … I am afraid of disease recurrence now…” (14). Another participant mentioned his concerns about the future of the disease: “… this stress continues .... the virus is still unknown, and people may get re-infected even after recovery… or a complication may persist…” (22). Data analysis also showed that patients may live with the symptoms of the disease for a long time. The participants mentioned that living with the symptoms of this disease could cause them anxiety. Regarding this, one of the participants mentioned: “.... I am still suffering from the disease’s symptoms … I did not completely recover and become really irritable …” (32).Data analysis indicated that patients experienced sleeplessness at night due to various problems and the symptoms of the disease. The participants’ experiences indicated that most of the disease’s symptoms, such as systemic, respiratory, and gastrointestinal complications, as well as headache, and anxiety were exaggerated at night, interfering with sleep and causing the patient to remain up all night. During the day; however, symptoms improved, allowing patients to sleep. According to one of the participants: “…I was very restless at night… felt heavy in my chest and could not sleep …” (7). Another participant said: “…I had pain, fever, and chills at night….my night sleep was disturbed… and I was sleeping during the day …” (3). Another participant cited: “… respiratory distress was exaggerating at night, disturbing sleep… “(4). Data analysis also showed that COVID-19 patients may experience nightmares due to severe pain and discomfort. The participants noted that tthoughts about losing some body parts and reviewing unpleasant childhood memories may be seen. In this regard, one of the participants mentioned: “…when I was sleeping on the hospital bed, I felt like I only had a brain and a heart and none of the other organs of my body…” (24), and continued: “…All my life, from childhood to the present, passed before my eyes ... these feelings came to me like dreams or as an external existence, it was like a movie playing in front of my eyes…” (24). Data analysis showed that wearing face masks constantly was annoying for patients, causing them discomfort and anxiety. One of the participants cited the agony caused by wearing a face mask “.... I was feeling suffocated. Wearing a face mask at home is nauseating …” (8).Data analysis indicated that patients with COVID-19 experienced many psychological distresses during the acute phase of the disease and even long after recovery. Various factors such as the nature of the disease, anxiety related to preventive behaviors, inefficient management by the health system, death anxiety, stigma, anxiety after recovery, and sleep pattern disturbance cause stress and anxiety in patients. In line with the findings of this study, many studies have highlighted the presence of psychological distresses among patients with COVID-19 , 21, 22,According to our data, the nature of the disease was a source of distress in COVID-19 patients. The lack of therapeutic measures, the increasing trend of the infection at the community level, the occurrence of numerous mutations, and the high mortality rate are assumed to cause stress in patients. In line with our findings, the fear and anxiety related to the unknown dimensions of the disease were reported in patients with COVID-19 in another study . On the Our findings showed that COVID-19 patients developed anxiety due to preventive behaviors. Quarantine and loneliness were sources of distress in COVID-19 patients. In this regard, the findings of a study showed that married patients with COVID-19 had experienced more psychological problems , which cOur findings showed that COVID-19 patients had experienced obsessive thoughts. Consistent with this finding, other studies confirmed the occurrence of obsessive thoughts and post-traumatic stress in patients with COVID-19 , 28. TheData analysis showed that one of the sources of anxiety in COVID-19 patients was the disease being recognized as a stigma. In line with the findings of this study, the results of another study showed that stigma can affect COVID-19 patients’ lives socially, personally, and economically . Social Data analysis showed that the poor management of the pandemic by the health system induced anxiety in COVID-19 patients due to inappropriate environmental conditions. Patients with COVID-19 had been admitted in crowded rooms alongside other patients with critical conditions.Consistent with the findings of this study, the results of another study showed that witnessing the death of critically ill patients was one of the sources of stress in the patients admitted to the hospital . HospitaAccording to our findings, COVID-19 patients faced some challenges during their treatment process. In line, another study declared that the lack of manpower, insufficient equipment, and a shortage in hospital beds could result in stress and anxiety . ManaginData analysis highlighted the lack of spiritual care and death anxiety among the important problems of patients with COVID-19. In line with these findings, another study showed that death anxiety in patients with COVID-19 can occur due to social isolation, restrictions in visits, and distance from the family . Death aOur data showed that patients may experience post-recovery anxiety. In parallel, other studies showed that more than half of patients with SARS-COV infection still suffered from psychological problems even months after recovery , 36. ConSleep pattern disturbance was noted as another problem of COVID-19 patients. In line with this, sleep disorders were reported in another study . Sleep pOne of the limitations of this study was that due to the restrictions caused by the pandemic, some of the interviews were conducted by phone calls, which could have affected data richness. By conducting in-person interviews as much as possible, we tried to overcome this shortcoming. Considering that the interviews were conducted after the recovery of patients , finding the key informant was somehow difficult. So, we tried to minimize the impact of this item by referring to the health care providers who knew the patients. Because of the risk of virus transmission during the interview, health protocols were followed as much as possible.Patients with COVID-19 experience a variety of psychological distress during the acute phase of the disease or even long after recovery. Various factors, including the nature of the disease, anxiety related to preventive behaviors, insufficient management by the health system, death anxiety, stigma, anxiety after recovery, and sleep pattern disturbance can trigger psychological distresses in COVID-19 patients. The national and local media can play an essential role amid this critical situation. They can inform people and boost social culture about the disease, highlighting that it is a dangerous, yet preventable and treatable, infectious disease, so they follow health instructions. In addition, the belief of the disease being a taboo can be alleviated. Psychological and spiritual counseling, as a key component of support programs for COVID-19 patients, should be considered during the acute phase of the disease and after recovery.


Many adolescent young caregivers (AYCs) care for a grandparent (GrP) with chronic disease, especially in countries with no or low developed long-term care systems and/or level of awareness of and policy responses to young caregivers. This mixed-methods study aimed at shedding light on the needs and difficulties faced by a sample of 162 adolescents aged 15–17, caring for GrPs, living in Italy (87) and Slovenia (75), respectively. A multiple linear regression model was built for the quantitative data. Qualitative data were content analysed using an open coding process. Italian and Slovenian respondents reported a moderate amount of caring activity and relatively high positive caregiving outcomes. Nevertheless, one out of three AYCs reported health problems due to their caring responsibilities. Compared to their Italian counterparts, Slovenian respondents were supported to a lesser extent by public services. Italian respondents faced communicative and practical problems; Slovenian AYCs experienced mainly emotional discomfort. AYCs from both countries requested emotional and practical support from formal services and family networks. Further, Slovenian AYCs requested emotional support and a personalized learning plan from schoolteachers. Support measures aimed at training AYCs of GrPs on geriatric care are recommended to address specific issues related to ageing and long-term care needs. Adolescent young caregivers (AYCs) are youngsters aged 15–17 years who provide care to one or more family member(s) or close friend(s) and often carry out significant or substantial caring activities ,3. ThereAYCs of GrPs are under-represented in international social research . The limited available literature highlights that they perform instrumental activities of daily living and provide companionship and emotional support ,9. FurthAYCs (of GrPs) generally experience both positive and negative caregiving outcomes. Positive outcomes include soft skills such as maturity , resilieAYCs of GrPs seem to experience more positive caring outcomes in comparison to AYCs of other care recipients e.g., parents and siblings . This coThe involvement of minors in caring for an older family member is related to population ageing trends  and the In addition, the COVID-19 pandemic and the consequent interruption or decrease of many public and private services addressed to older people with LTC needs, e.g., home care and day-care centres ,31, incrThe awareness level of the role played by AYCs in society, the knowledge about the consequences of caring on AYCs’ lives, and the policies supporting AYCs tend to differ across Europe, as depicted by Leu and Becker . AccordiNeither Italy nor Slovenia has national legislation recognizing informal carers, regardless of their age; thus, the recognition and protection of AYCs is reliant upon “non-specific legislation” covering other more universal rights such as education, health and social care, and child safeguarding and protection legislation .In Italy, a draft national law for the recognition and support of family caregivers presented in 2019 is still pending in the Senate  and the In Italy and Slovenia, support and protection to AYCs can be provided indirectly by legislation for the protection of people with disabilities and LTC needs and/or of a youngster’s childhood. In Italy, this is possible by providing support to care recipients, e.g., disabled older people. As monetary transfers prevail on in-kind services , the StaMoreover, AYCs’ health and well-being could be defended by the Law 451/1997 , establiIn Slovenia, indirectly supporting legislation entails several laws. Among the latter there is the Social Security Act, which is the basis of services within the family . Moreovehttps://edycare.eu/, accessed on 9 January 2022) aimed at empowering teachers and school staff  working in upper secondary education to recognize AYCs, maximize their learning opportunities and strengthen their social inclusion. Further, the “Me-We” project  implemented and evaluated a psychoeducational intervention for increasing the resilience of AYCs in six European countries, including Italy and Slovenia. Nevertheless, generally, in the latter countries, dedicated training targeting teachers, social workers, and health professionals to enable them to recognise and reach out to AYCs, and dedicated support interventions for AYCs, continue to be rare. Also, the majority of Italian and Slovenian regional public social and health care services tend to ignore AYCs.In both countries, several services targeted at AYCs arise from international projects financed by the European Commission. For example, the “EDY-CARE” project  What are the difficulties and support needs of AYCs of GrPs in Italy and in Slovenia, respectively? (2) Which policies and support interventions should be implemented in each country, considering the level of awareness of and the policy responses and service supports available for AYCs?Data for this analysis form part of a large online survey carried out in 2018 and reaching 6119 youngsters in Italy, Slovenia, Sweden, Switzerland, the Netherlands, and the United Kingdom within the Me-We project that was aimed at increasing the knowledge about the mental health and well-being of European adolescents with caring roles.Since this was the first major international survey mapping AYCs in Europe, the sole criteria for being included in the survey was being aged between 15 and 17 years and being available to fill in the questionnaire. In Italy as well as in Slovenia, due to the low level of awareness and the lack of specific social measures and interventions targeted at AYCs, the latter were recruited in high schools, as this was considered the environment in which as many teenagers as possible could be readily reached. In both countries, the schools selected for the recruitment were of different types in order to guarantee the participation of students with varied and heterogeneous socio-economic backgrounds.School managers were contacted by the researchers and a meeting was arranged for explaining the purpose of the survey and for agreeing on times and procedures for conducting the survey.In Italy, 17 upper secondary schools  were identified for being involved in the survey. Only two of them (both in the Marche region) refused to cooperate in the initiative . The 15 schools that were engaged in the recruitment were six lyceums, six technical schools, and three vocational schools.In Slovenia, AYCs were recruited in 10 upper secondary schools, i.e., four general high schools, three vocational schools for health professionals, and three school centres that comprise various school programs, including general high schools and vocational schools for health and educational professionals, located in different regions across the country. Among the schools contacted to be involved in the study, only one high school for health professionals in Ljubljana refused to participate.Each data collection activity in both countries was preceded by a meeting with students during which the researchers introduced the topic of AYCs and what being an AYC means. This was necessary due to the scarcity of knowledge and information about caregiving at a young age.In the two countries, data were gathered mainly through paper and pencil administration in light of the large number of students (in some cases more than 200 for each plenary meeting) and the limited number of electronic devices available. When the latter were available in a sufficient number, the survey was carried out mainly on personal computers available in the school’s informatics classroom(s) using the 1 ka online platform to guarantee participants’ anonymity and privacy.Formal ethics approval was obtained in the spring of 2018: in Italy from the Alma Mater Studiorum at the University of Bologna, responsible for the data collection in the Emilia-Romagna  and the Marche region , and in Slovenia from the Ethics Committee on Research at the Faculty of Social Sciences (KERFDV in Slovenian).All respondents were recruited on a voluntary basis in accordance with the Declaration of Helsinki   and thisAYCs were screened through two anchoring questions in the questionnaire. Then, within the whole sample of AYCs, a sub-sample of adolescents caring for GrPs was identified through a further anchoring question asking about the type of relationship with the cared-for person.A mixed-methods (MM) study design  was adopThe questionnaire included questions on demographic data, caregiving activity, impact of caring on respondents’ health and education, supports received, and three psychometric scales for assessing the level of caring activities and the impact of care on AYCs.The quantitative outcomes measures in the study included the Multidimensional Assessment of Caring Activities (MACA) ; the PosMACA-YC18 is an 18-item self-report questionnaire asking young people about the type and frequency of their caring activities . An overall score is calculated ranging from 0 to 36. A score = 0 indicates that the respondent is not a caregiver; a 1–9 score means a low amount of care activity; a 10–13 score means a moderate caring activity; and a score of 14 and over indicates a high and very high amount of care.PANOC-YC20 is a 20 item self-report measure that obtains indexes of positive  and negative outcomes  of care provision each ranging from 0 to 20. Each item is rated on a 3-point scale: “never” = 0, “some of the time” = 1, and “a lot of the time” = 2.KIDSCREEN-10 is a 10-item measure of the health-related quality of life standard that provides a single score of HRQoL ranging from 10  to 50 . This measure was treated as a continuous variable.AYCs were also asked to report if they suffered from health problems in connection to the care activity provided and to specify if these problems were physical , psychological , or other.The variable “health problems related to care” was born from a question asking the respondents to indicate if they suffered from any physical and/or psychological disorder due to care, e.g., back pain, headache, muscle tension, and/or anxiety and depression.The non-standardized questions on health and choice options were identified based on the previous research studies on (A)YCs ,20,21,22The variable “formal support” includes statutory agency/governmental supportive programs, services, and state monetary benefits targeted at the AYC and/or the older care recipient, while the variable “informal support” refers to help from other family members, friends, and neighbours. The assessment of formal and informal support was triangulated with the open-ended items described below.The qualitative data were derived from two open-ended questions: (1) What can support you in your role of caregiver? (2) If you are caring for an older person (aged 65 and over), which are the main difficulties you are facing?t-test or one-way analysis of variance (ANOVA), as appropriate. Categorical variables were expressed as the absolute number and percentage and statistical significance was assessed by Pearson’s Chi-square test. The statistical significance for this study was set at p < 0.05. Statistical analyses were conducted using the Stata 15.1 Software Package for Windows .Concerning QUANT measures, continuous variables were reported as mean and standard deviation (SD); comparison of variables between groups were performed by unpaired Student’s The QUAL responses were content analysed by applying an open coding process , a methoThe trustworthiness of the qualitative elements of the study  was reached by ensuring methodological rigor and internal process assessment as recommended by literature on social sciences research methodology ,56,57. FThe whole sample was comprised of 162 AYCs caring for GrPs: 87 from Italy and 75 from Slovenia, respectively. Female participants represented 79% of the whole sample with a statistically significant difference between the two study countries. In fact, female respondents constituted more than 93% of the sample in Slovenia compared to 66.7% in Italy. In Italy, the AYCs were mainly aged seventeen years (48.3%), while in Slovenia they were aged sixteen years (53.3%).In both Italy and Slovenia, AYCs were born in the same country where they resided. A total of 64.0% of Slovenian respondents lived with their grandparent(s) compared to 19.5% of Italians.Italian and Slovenian AYCs provided 2.7 and 2.3 h of care per day to their GrPs, respectively .The most common diseases among the GrPs of the surveyed AYC, were physical disability (more than 62% in both countries), cognitive impairment , and mental illness , without any statistical significance.Approximately one-third of Slovenian and Italian AYCs reported physical and/or psychological health problems as a consequence of their caregiving activities .Italian and Slovenian AYCs of GrPs reported a medium caring activity (MACA) score ranging from 10 to 13, but the Italians were at the lower limit of the range, while the Slovenes slightly exceeded it so that the difference between the two groups is statistically significant, indicating that young Slovenians had a greater care burden than Italian AYCs.p = 0.048).Interestingly, positive caregiving outcomes (PANOC-Pos) prevailed over negatives ones in both the sample groups and Slovenian AYCs experienced more positive caregiving outcomes than Italian AYCs . Only approximately one-third of the two sample groups received informal help, e.g., from other family members and neighbours . Moreover, AYCs in Slovenia receiving formal support also received informal support significantly more often than AYCs who did not receive formal support.p = 0.032) and received less formal support than AYCs not receiving informal help (p = 0.000). Italian AYCs of GrPs receiving informal help reported a lower KIDSCREEN score, i.e., a worse quality of life, compared to AYCs not receiving informal help and the difference is statistically significant (p = 0.032).The analysis also showed that Slovene AYCs receiving informal help reported more health problems  including general and physical help, financial support, and information and training, while Slovenian AYCs needed emotional and moral support (13 quotations), as reported in Furthermore, the analysis highlighted that all respondents faced material and emotional strains, regardless of the country of residence, while two subcategories were specific to Slovenian AYCs: “School problems”, related to the category “Material difficulties”, and “Difficulties in managing behavioural characteristics”, included in the category “Emotional and psychological difficulties” .With regard to the support needed by AYCs of GrPs, the analysis highlighted four main categories: “Support not required or undefined”, “Material support”, “Emotional and moral support”, and “Other supports”.The category named “Support not required or undefined”, as shown in I’m a semi-temporary caregiver. I carry out assistive activities by supporting my grandparents who, due to their age, are unable or find difficult to carry out certain activities in their daily life. Currently, I’m mainly concerned with my grandfather, who is carrying out rehabilitative activities following a major fall. Therefore, I don’t think I need any further support.”“.“I don’t have a big carer role because my grandfather doesn’t have many care needs”(Slovenian respondent).Other respondents, both Italians and Slovenian, stated that their willingness to take on a caregiving role was due to their desire to help or due to the affective relationship with their grandparent(s). As a result, they did not feel the need for any kind of support:Nothing, I do it because I grew up with that person and I don’t want to abandon her despite it being a degenerative disease. Nothing is needed when things are done with the heart.”“.It was never difficult for me to help someone who needs my help. I always try to the best of my abilities. If someone helps me with this it´s his decision and his good will”“(Slovenian respondent).The second category arising from the analysis is the need for “Material support” , that in“Someone to help me assist the sick person”.The need for “Financial support” expressed the need of a recognition of the AYC’s role, while the “Physical support” is related to the need of practical support in carrying out daily activities, i.e., getting up and moving:Financial support from the state since the merits and above all the great sacrifice of a boy who puts the lives of others first than his must be recognized”“.Help them do what they aren’t able to do, for example accompany them to go out, help them to sit and to get up”“[A support to] .As shown in I would like to receive advice on how to better organize my day’s activities”“.I would like to be well informed about what I´m going to do. To be informed about the possible complications or problems that I can stumble upon”“(Slovenian respondent).“In the role of caregiver I would need a doctor with me to know how to help my grandma with the disease”.“That I would get some advice from a person that is experienced in this field”(Slovenian respondent).The third major category identified was the need for “Emotional and moral support”, which was related particularly to the Slovenian respondents . These rMoral support”“.A little company and a form of empathy from the teachers would help me”“.“For me to feel more useful”(Slovenian respondent).My support could be, or rather they are, my good friends who I can confide in when it gets hard for me”“(Slovenian respondent).The final category is named “Other support”  and was The most prevalent difficulties are related to “Material difficulties”, which were classified into seven subcategories, respectively .As shown in Changing the Stoma bag”“(Slovenian respondent).Insecurities about the right medicines to make my grandfather take”“.“Difficulties in helping the care recipient with moving and handling”, related to the relationship between AYCs and GrPs, highlights the physical burden as a consequence of the age/weight gap and of the difficulty to move a disabled and “uncooperative” grandparent safely:“Her body weight is heavy for me and the smell of certain leakages is disgusting”.The main problem is that I have problems lifting a person, that’s why I also have back problems”“(Slovenian respondent).The sub-categories “lack of time”, “financial difficulties”, “lack of information”, and “difficulties in helping parent’s life-work balance” were specific to the Italian respondents. These often referred to practical challenges and logistical aspects, as shown in the following quotations:“I haven’t enough time”.I think the Government should help more informal caregivers because you can often feel that you’re not able to assist someone else due to financial constraints e.g., treatments, facilities, visits, medicines, etc. …)”“.What I miss more is the lack of information”“.Sometimes I also go to work with mom to help her and so it’s difficult to combine study, care and work”“.Finally, Slovenian respondents reported difficulties in the management of school life, as expressed by the sub-category “School problems”:When I want to study someone always bothers me and that’s when I lose my concentration”“(Slovenian respondent).The second category concerns communication difficulties, reported by 29 Italian AYCs ; it inclRepeating things over and over to make them understand”“.Understanding their problems and understanding how to help them not to think about it”“.I find it difficult to understand my grandma: she has speech and hearing difficulties”“.The category “Emotional and psychological difficulties” included four different sub-categories, one reported by both Italian and Slovenian respondents, in particular “Difficulties in supporting the care recipient’s mood” , clearlyAge, it’s worse by the years. Everything hurts her and together with her I feel sad for her pain too”“(Slovenian respondent).It’s difficult for me making my grandparents smile really”“.The subcategories “Feeling of discomfort, sadness, and guilt” and “Fear of not managing to take care” were specific to the Italian respondents and are, respectively, concerned with emotions of sadness related to the care recipient’s illness and with the fear of not being able to provide good care:I simply feel deeply sad to see my paternal grandparents in the state they are, suffering from dementia”“.I’m worried that I can’t take good care of them”“.The “Emotional and psychological difficulties” also included “Difficulties in managing behavioural characteristics”, which was specific to the Slovenian respondents:Grandmother is sometimes grumpy if all things aren’t as she says, she complains a lot if I don’t have time to, and my brother could help because he’s on his computer most of the time, (she) is mad at me, insults me; she doesn’t think of the help from my younger brother”“(Slovenian respondent).Finally, the analysis highlighted the category named “unspecified difficulties”, reported solely by Slovenian respondents, which included quotations that expressed the presence of difficulties without specifying them:“It’s difficult for me limiting the risk that my grandma could do something wrong for herself and she might get hurt”(Slovenian respondent).This study hypothesized that the phenomena of AYCs caring for GrPs is prevalent especially in countries with less well developed LTC systems and with a lower level of awareness, supports, and policy targeting informal carers in general and especially adolescent and young people covering caring roles within the household. This is the case for Italy and Slovenia, the two countries of focus in this study, classified as “emergent”  and “awakening” (Slovenia) . Since tThe mixed-method (MM) approach has proved suitable for exploring the complex and little-known phenomenon of intergenerational caring between adolescent grandchildren and GrPs. On the one hand, in fact, quantitative analysis has provided a comparative picture of the situation of a sample of AYCs in the two countries. On the other hand, the qualitative analysis provided input on “how” a group of adolescents experienced caring for a grandfather/mother with LTC problems and the nature of their support needs.To the best of our knowledge, this is one of the first MM studies giving voice to AYCs of GrPs, framing the outcomes in the LTC systems and interpreting findings in light of the low level of awareness and dearth of support measures and policies for this group of informal carers.Several differences emerged from the MM analysis between the two national samples.In the Slovenian sample, living with GrPs was more common than in the Italian one, and probably this situation increased the likelihood for Slovenian AYCs to be involved in caregiving activities of their GrPs . Since ICaregiving for a GrP in general had more positive than negative outcomes, especially among the Slovenian AYCs. This suggests that, in line with the literature, the affection and willingness to give back the care and love received during their earlier childhood might buffer the disruptive effects of taking care of an older disabled relative . The higResults showed that Slovenian AYCs receiving formal support reported twice the hours of care on average and more and higher negative caregiving outcomes than AYCs not receiving formal support. They could also count on informal help, suggesting that the mix of formal and informal support in Slovenia is not sufficient to fully address the support needs of AYCs and their older family members with LTC needs .Likewise, Italian AYCs who received informal help had a worse perception of their quality of life. This confirms that the dearth of home health care services to older people with LTC needs is often counteracted by the informal care network , suggestThis study confirms that in the two study countries, adolescents are part of older and disabled people’s informal care networks, and that taking on the role of carers can often follow a family code ethic according to which GrPs are expected to look after younger grandchildren and older grandchildren are expected to take care of their frail GrPs ,65,66,67Moreover, in countries with a lack of a well-developed LTC, i.e., with poor home care service supports to older people and informal carers, often the whole family is involved in providing care to a sick or disabled older family member, even more so when the latter goes to live in their adult children’s home, where their grandchildren also live. In this case, the entire family is concerned, and caregiving commitments affect family roles and every individual family member by making changes in responsibility, personal privacy, proximity, and frequency of contacts with household relatives including GrPs ,70. In tThe qualitative findings confirmed the quantitative results and shed light on the specific difficulties encountered by Italian and Slovenian AYCs of GrPs. In fact, Italian AYCs mainly underlined communication problems and asked for material support for managing practical caring tasks that fatigued them from both a physical and relational point of view.Conversely, Slovenian AYCs largely reported difficulties in the psychological realm and in managing GrPs’ behavioural disturbances, and such strains are mirrored by the request for emotional support. In fact, Slovenian AYCs living in multigenerational households could be exposed to the stress arising from the caregiving environment and especially from the behavioural disturbances of GrPs with mental illness, Alzheimer’s disease, or other types of dementia .The study findings mirror the LTC systems operating in the two countries by underlining the dearth of actual formal support services available for AYCs, especially in Slovenia ,25,26,27The sources of support requested by AYCs also reflect the LTC system where they live and grow up. In fact, Italian AYCs asked for monetary transfers probably because they are aware that this is the most common formal support that they can receive ,40. SimiFurthermore, the quantitative analysis showed that some Slovenian AYCs had school attendance difficulties and qualitative findings revealed that the source of such a difficulty stands in the continuous requests for help by the care recipient and/or the family environment.Finally, it is noteworthy that, according to qualitative findings, among the Slovenian AYCs there also emerged some gender care stereotypes, for example in the case of a grandmother refusing the help from her male grandchild and expecting help from the female grandchild involved in this study.The study results enable the identification of key recommendations for policy and practice in the two participant countries.Home health care services should be improved in Italy and especially in Slovenia, prioritizing older people with dementia, whose behavioural problems represent an extra source of burden for AYCs.Slovenian AYCs’ difficulties in reconciling care activities with school attendance call for training meetings for teachers, school managers, social workers, and psychologists to sensitize them to the phenomenon of AYCs in order to recognize and offer/refer them to appropriate sources of support, e.g., distance (online) lessons, and/or by granting flexibility in getting to and from school and in doing homework. Moreover, the psychological and emotional strains of Slovenian AYCs calls for psycho-educational interventions that can foster the AYCs’ resilience such that they can better manage their emotions and mitigate risks to their mental health and well-being .Italian AYCs, experiencing practical and material difficulties and wishing to care for their GrPs could benefit from responsive education and learning opportunities related to geriatric care and age-related issues, e.g., how to communicate with older people with dementia, how to move an “un-cooperative” disabled person, and what to do in case of an emergency.Major attention should be reserved for AYCs co-habiting with their GrPs, because they are more exposed than non-cohabiting carers to higher intensities of caring and to the subsequent risk of poorer health outcomes as confirmed by quantitative and qualitative data.Moreover, a follow-up of this MM study should be carried out for understanding to what extent the COVID-19 outbreak affected the caregiving activities of AYCs of GrPs and their mental well-being, considering that older people were those identified as being at a greater risk of mortality as a result of contracting the COVID-19 virus and that the youngsters were often the most penalized population group in terms of physical distancing ,75,76. SThis study is not without limitations. We acknowledge the small sample size and the fact that AYCs were solely recruited in schools in both countries. This convenience sample makes it unfeasible to generalize from the study results. Thus, randomized controlled trials involving large samples are needed in future research to study the experience of AYCs of GrPs, also from a gender perspective.At the same time, qualitative studies can bring an added value to the research by shedding light on and deepening the real-life experiences of this still largely neglected group of informal carers.Italian AYCs of GrPs experience difficulties in performing practical caregiving tasks and in communicating with care recipients. Slovenian AYCs are exposed to psychological and emotional stress coming from co-habiting in multigenerational households, which may include GrPs with Alzheimer’s disease or other forms of dementia. Both groups of AYCs are impacted negatively by the lack of formal support existing in both countries. Moreover, the informal help they receive is not sufficient for counteracting the negative impacts of caregiving on their quality of life. Clearly, AYCs are influenced by their respective national LTC systems and this is mirrored by their expectations about their desired supports. Slovenian AYCs mainly requested emotional support from informal care network members, while Italian AYCs expected to receive material support and monetary transfer from the Government.The study findings confirm the classification of Italy and Slovenia as “emergent” and “awakening” countries, respectively, in terms of awareness, service supports, and policy. They also enrich this classification by shedding light on the effect of the dearth of appropriate legislation and support on AYCs’ lives.The results call for policy recognizing and supporting AYCs, and in the specific case of AYCs of GrPs, for measures strengthening the provision of home healthcare services for older people with LTC needs in both countries, though mainly in Slovenia. Moreover, it is important to note the need for training boosting adolescents’ knowledge, skills, and competences for managing and communicating with older people with disabilities, especially in Italy and for caring for older people with dementia, especially in Slovenia. Likewise, it is important to provide training opportunities for school staff to recognize AYCs and provide/refer to appropriate sources of support. Psychoeducational interventions that can improve AYCs’ resilience are welcomed in both countries.While this article was being fine-tuned, a new country classification was published by Leu et al. , where I


From a clinical perspective, effective and efficient communication is part of a strategy to ensure doctors are providing high-quality care to their patients. Despite the positive impact of effective doctor–patient communication on health outcomes, limited information is available on this in Fiji. This study was carried out to determine the current patients’ perception of doctors’ communication behaviour and identify factors affecting the doctor–patient communication in Fiji. This mixed-method study was conducted in the outpatient setting of three randomly selected health centres in the Suva Subdivision, Fiji. For the quantitative phase, systematic random sampling was used to select the 375 participants who completed the structured questionnaire; of those, 20 participants were selected for the qualitative interview. From the patients’ perception, 45.6% of them perceived doctors’ communication behaviour as good, 53.6% as fair, and 0.8% as poor communication behaviour. Qualitative findings highlight factors such as the attitude of the doctors, their approach, their interaction with the patients, and them providing an explanation as important factors during doctor–patient communication. In Fiji, the majority of patients perceived doctors’ communication behaviour as fair to good and the doctors’ skills were important for effective doctor–patient communication. This study highlighted the importance of doctor–patient communication and suggested that doctors might not be practicing patient-centred care and communication; thus, they need to upgrade their patient-centred communication skills. There is nothing new or innovative in stating that doctor–patient communication is critically important. Indeed, there is a pool of literature detailing doctor–patient communication, its impact on health outcomes, and highlighting areas for improvement ,4,5,6,7.Communication is a process involving the transmission of information or exchange of ideas between two people, the communicator and the recipient. Communication skills refer to, ‘the ability to convey information to another effectively and efficiently’ , includiThe important aspects of doctor–patient communication includes developing a good interpersonal relationship, being a listener, exchanging information, and making patient-centred management plans ,4. Good In primary care, patients strongly prefer a patient-centred approach with communication, partnership, and health education . In contTo achieve patient-centred care, patient-centred communication helps in creating opportunities and supports patients in becoming active participants in their health care leading to effective doctor–patient communication ,17,18. SGood doctor–patient communication is more likely to result in patients being satisfied with their care, follow the doctor’s advice, adhere to their treatment plan, better mental health, enhanced psychological adjustments, especially with poor prognosis and delivery of bad news, and a decrease in the number of hospital admission days ,19. ThesIn Fiji, medical services are mostly provided by the government health centres, and they provide free services to patients. Due to the high number of patients attending health centres and also limited available health facilities, patients have to wait a long time to visit a doctor. Patients attend health centre and refer to a doctor that is available. Doctors access patients’ information through a health information system that records all the patients’ medical history. In Fiji, the Health Ministry has voiced concerns over poor communication of doctors which has resulted in complaints against doctors, leading to doctors being disciplined due to poor communication and decision making . An appaThis was a mixed-method study with a quantitative and qualitative design, conducted in outpatient departments of randomly selected health centres in the Suva Subdivision of Fiji (from July to August 2018). A cross-sectional survey of patients was undertaken, followed by semistructured interviews with a subset of the larger sample. In this study, the survey and qualitative study were conducted simultaneously. A qualitative approach with in-depth interviews was carried out to support the findings from the quantitative study. The concept of methodological triangulation was used whereby the quantitative design aided in providing a validated method to measure patient perceptions of doctor’s communication behaviour, whereas the qualitative design aided in gathering an in-depth understanding of patients’ experiences and expectations of communication with doctors ,23,24.This study included patients aged over 18 years, of any ethnic background, of any gender, with self-identified Fijians who understood either English, Hindi, or Fijian. Those who were not willing to participate or had some form of cognitive disorder were excluded from the study. Written consent forms were given to those who met the inclusion and exclusion criteria and upon return, respondents were recruited into the study.There are seven health centres in the Suva Subdivision, and from this, three health centres were randomly picked from a jar of chits with the health centre name. For the cross-sectional survey, participants were selected using systematic random sampling whereby every third person waiting to see the doctor was approached and those who met the inclusion criteria and were willing to participate were selected for the study.The estimated sample size for the quantitative phase was estimated using 50% response distribution, 5% margin of error, and 95% confidence interval . The estFor the qualitative phase, convenience sampling was used. The participants from the cross-sectional survey were approached at the same time and those interested (by signing the consent form) in taking part in the interview were selected at the same health centre. The total number of participants for the qualitative phase was 20 based on data saturation. Guest et al. proposed that the minimal sample size needed to obtain enough information is often around 12 participants in homogeneous groups .The cross-sectional survey was conducted with a structured questionnaire with close-ended questions. The questionnaire was guided by the concept of the ‘four-habits model’ for medical interviews; invest in the beginning, elicit the patients’ perspective, demonstrate empathy and invest in the end . In a reIt was ensured that the statements and questions extracted had high internal reliability with a Cronbach’s score of 0.7 or more ,29. Two The questionnaire contained two components—component 1 focused on the socio-demographic information of the participant, and component 2 contained 8 close-ended questions which focused on the communication behaviour of the doctors. Response to the statements and question utilized a Likert 5-point scoring scale; strongly agree, agree, not sure, disagree, and strongly disagree. For positive statements such as, ‘My doctor gave me the opportunity to ask questions’, strongly agree was given 5 points and regressed down to 1 point for strongly disagree for positive statement. For negative statements such as, ‘Sometimes I feel the doctor ignores my concern’, strongly agree was given 1 point, and strongly disagree was given 5 points. The maximum score could be 40, while the minimum score could be 8. With the use of bilingual translators, the questionnaire was translated into two other languages, Fijian and Hindi. To ensure that the contents of the original questionnaire matched the translated version, the translated versions were translated back from Hindi and Fijian to English by different translators .Although the reliability of the questionnaire was not tested before being used for the study, the reliability was tested  using the data collected during this study (375 questionnaires). For component 2, Cronbach’s alpha score was 0.76 for the 8 items.For the qualitative phase, semi-structured interviews were undertaken, which took 30–40 min long per interview. All interviews were audio-recorded. The interview was facilitated with the use of open-ended questions which focused on the participant’s feelings and opinions about their interaction with their doctors and expectation of doctors’ behaviour during the consultation. Questions focused on issues related to their medical consultation overall and communication such as, ‘Were you able to understand what all the doctor advised you? Please explain’, ‘Did you feel scared, relaxed, comfortable or safe while with the doctor? Please explain why’.The raw data from the quantitative questionnaire were entered into Excel and after data were cleaned, it was transferred into IBM SPSS, version 21 . The sociodemographic variables and communication behaviour were analysed using descriptive analysis . For analysis, communication behaviour was divided into 3 categories: ‘Good communication behaviour (32–40 points)’, ‘Fair communication behaviour (17–31 points)’ and ‘Poor communication behaviour (8–16 points)’. The category was based on the scoring point range and standard deviation (SD); scores more than or equal to +1 SD were taken as good communication or full trust, scores less than or equal to −1 SD were taken as poor communication or lack of trust, and scores between ±1 SD were taken as fair communication or partial trust.For all the interviews, the audio recorded information was transcribed into a Word document using modified verbatim transcription, after the direct translation was carried out for a few interviews. Audio recordings were listened to three times in order to transcribe the data accurately. Few transcribed interviews were randomly chosen and checked for accuracy by a co-researcher. These data were then analysed using manual thematic analysis . The 6-pEthics approval was obtained from the Fiji National University College Health Research Ethics Committee (CHREC) and from the Fiji National Research Ethics Review Committee (FNRERC) in June 2018 with ethical approval number 2018.126.C.D. After both the ethics committee’s approval was received, approval was requested from the subdivisional officer and written requests and approvals were obtained from the medical officers in charge of the selected health centres.A total of 375 completed questionnaires were returned from the 410 questionnaires distributed, hence a response rate of 91%. Data from these questionnaires were analysed, and There were eight statements used to assess doctors’ communication behaviour, as summarised in Communication behaviour scores were converted into a categorical variable; divided as ‘Good communication behaviour (32–40 points)’, ‘Fair communication behaviour (17–31 points)’, and ‘Poor communication behaviour (8–16 points)’, as summarised in The qualitative data were analysed using manual thematic analysis. A total of 20 interviews were conducted, of which there were an equal number of males and females (50%) and an equal number of i-Taukei and Indo-Fijians (50%). The mean age of the participants was 42 years (SD = ±12), with ages ranging between 23 years to 66 years. There were 14 participants who were below 50 years of age, and 6 participants who were 50 years or older. After the analysis of the data, the themes generated included the characteristics of the doctor’s communication behaviour, patient-centred communication, and patient’s expectation during consultation.For the majority of participants, the overall attitude of doctors matters during their consultation, including the doctors’ tone and approach upon entering the consultation room. Participants appreciated doctors for being polite and friendly, which made them feel comfortable.‘The doctor was friendly and polite’.‘I feel comfortable, they are not harsh or rough with you… they do their part’.For a few, the doctors’ approach decreased their frustration with a long wait and their nervousness.‘In the beginning, I am bit scared but when I enter the room and the way the doctor greets me, I can understand that I can be comfortable with this doctor’.The first impression of the doctor  also made a difference to participants. Some patients appreciated the way they were welcomed by the doctors; their facial expressions, a simple smile, and greeting, which made them feel welcome and comfortable.‘The ways doctors approach me…uhm and the way they talk and their tone’.‘Their first expression… the way they look and greet…’.Participants even felt that some doctors made extra effort to make them feel comfortable during the consultation simply by looking at them as a person and not simply another patient in the queue.‘I’ll say probably he had treated me as a person…he left his level of being a doctor and explained to me as a lay person, cared for me…I was comfortable’.While the majority of participants had appreciated the doctor’s attitude in a positive way, a few experienced the opposite from their doctors. The doctor was rude to them and did not talk or explain things in a kind or respectful manner.‘…the doctor was rude, just saw, wrote the prescription…just sitting and didn’t ask’.‘…but at times might not be all the information that I needed. Sometimes the doctors don’t explain well, depends on the doctors…’.Providing explanations and ensuring that patients understood the advice or treatment plan was important for almost all the participants. Whether it was primarily related to their medical condition, dietary advice, or treatment plans, participants stated they were satisfied with the consultation and treatment plans.‘They explained things to me… they discuss the treatment with me, explained the side effects and asked if I was allergic to any medicine’.‘The 100% is how they perform when they explain the sickness to you, the right medication and what it can do and the side effects’.While for a few, they got more frustrated and even angry when the doctor did not talk to them respectfully or explain things appropriately.‘Felt angry as doctor didn’t explain or examine… couldn’t ask because of fear… looked bit stubborn doctor’.Some participants talked about their experiences which reflected ‘patient-centred communication and care’ and these participants appreciated their involvement in the discussion. They appreciated the fact that the doctors were listening and respecting their opinion and this made them share more information with the doctor.‘They respect your opinion… they gave me time to ask the questions and I asked them more questions’.Allowing patients to ask questions or clear their doubts or have a say in their management was one of the positive feedback from the participants, and some doctors involved them when deciding the treatment.‘Here they listen to my opinion’ , while another 39 years, Indo-Fijian female stated, ‘The doctors talk very nicely, they let me ask questions…’.‘Yes, they discuss the treatment with me, explained the side effects and asked if I was allergic to any medicine’.Some participants stated that they were not fully involved during the consultation process and faced a one-way communication whereby the doctor was speaking and making the majority decision. Though, they mentioned that it would have been appreciated if the communication was more collaborative involving two-way communication whereby patients were equally involved in the conversation. In addition, some participants thought it was difficult to share all information with the nurses, which they would rather share with the doctors and if doctors do not conduct a proper medical interview, they might end up with inadequate management plans.‘…most questions have been asked by the nurse, not by doctor. Nurse just gives, and doctor reads it. She can read and ask again, it’s a follow up questions… sometimes you can say different thing to nurse’.A few participants also showed disappointment as a result of inadequate relaying of information to the patient on the management plans.‘The medicine was not here, and I have to buy the medicine. He (the doctor) never ask and told that I need to buy it. I would appreciate if the doctor can ask’.In contrast to the doctors taking the lead in initiating better communication, some participants highlighted that the patients need to be responsible and play an active role rather than being passive recipients.‘If you ask questions, then they can give you answers. If you don’t ask, then they don’t know what is happening. If you keep quiet…they just write and give prescription. They listen when I ask. Have to ask if don’t understand’.Participants expected their doctors to consult them in a certain manner; either ask questions, examine them or explain things to them.‘…well I was expecting for her to give me a medical check like I would prefer if she (the doctor) could examine me but she didn’t’.When participants came to the hospital, they wanted to know what was wrong with them and how they could recover.‘I wanted to know what was wrong with her, but the doctor didn’t explain anything’.Participants believe that if doctors can spend more time per patient, it will result in better consultation.‘I hope we can spend more time, average of five minutes at the moment’.Despite the workload, the participants at least expect doctors to be friendly and initiate a conversation with proper history taking, examination, and explanation to them.‘Some doctors just want to go fast as possible whereas they should be friendly and ask about the problem and explain what’s wrong with the patient’.‘Some of the doctors are rude and I understand that its part of their work…’.The study findings indicate that for a developing, middle-income Pacific Island country, around half of patients attending outpatient services in the Suva Subdivision in Fiji, consider doctors’ communication behaviour as fair rather than good (53.6% vs. 45.6%). In contrast, a study in Chicago  found that the majority of the participants perceived the doctors’ behaviour as either excellent or very good  , highligOur study findings suggest that doctors are currently practicing both one-way and two-way communication styles, although it generally seems that doctors play a dominant role during consultations, as evident from statements 3, 4, and 6 of the qualitative results. Although the majority of participants overall agreed with these statements, these three statements had the lowest percentage of participants agreeing with them, compared to other statements.This was further supported by qualitative data, according to which some participants felt they were able to share their opinions and queries with their doctors, while others felt that they were not empowered to engage with their doctors. The important factors that made patients comfortable were the attitude of the doctors, the approach of the doctors when patients arrived at the consultation, involving the patients in discussions, and providing advice, explanations, and prognoses in nonscientific language. Sometimes, due to the difference between patients’ expectations and the actual encounter, doctors are faced with difficult encounters and patients end up dissatisfied . The quaDoctors’ interpersonal skills such as greeting patients, being polite, friendly, and respectful are appreciated by patients, resulting in patients being satisfied with their consultation and treatment provided. Advocating health literacy by sharing medical information, advice, and treatment plans also results in patient satisfaction, whereas those who had a very limited conversation with their doctors with no explanation or advice given were disappointed. This finding is consistent with the findings from other studies ,35,36. FThis is the first study in Fiji to undertake a mixed-method study of patient perceptions of doctor–patient communication. The sample size of the cross-sectional study exceeded the sample size in our power calculation, achieved with a response rate of 91%. We accessed patients whilst they were in health care centres so they could answer questions in relation to recent doctor–patient encounters. The addition of qualitative interviews added to the depth of our study. However, this study has some limitations in terms of international generalisability, particularly to higher-income countries. The majority of participants had higher-level education, and therefore, this might have affected their answers to the questions. The questionnaire used for the quantitative design was not tested for reliability before use, although it was calculated after the cross-sectional survey and was found to be both valid and reliable for future use. This qualitative study focused on the patients’ perception of doctors’ communication behaviour. Further study on doctors’ perceptions of factors affecting their communication is needed. This study was also limited to urban and peri-urban settings.This study’s findings provide baseline information on the communication behaviour of doctors currently practicing in Suva, Fiji. It can be stated that currently, the majority of the patients perceived their doctor’s communication behaviour as fair in the Suva subdivision. Factors such as the doctor’s approach and tone, involving patients with patient-centred communication and care, providing advice, explaining their medical conditions, and explaining treatment being provided and probable prognosis in nonscientific language are important factors for doctors to practice while communicating with their patients. Given the benefits of better doctor–patient communication, such as better patient satisfaction, adherence to the treatment plan, better health outcomes, and less recurrent visits or admissions, it would be recommended for the policymakers in Fiji to implement refresher training on upgrading the communication skills of doctors every 2 to 3 years. It would be recommended that the concept of patient-centred care and communication be more prioritised in the medical curriculum whereby doctors’ communication skills are assessed together with their clinical skills.Effective communication is needed in every relationship between the health care system and the public. Either in providing treatment to the patients or doing health promotion, effective communication can ensure better compliance with the plan. Health promotion programs will be more effective through effective communication processes.