Perinatal bereavement is an event that greatly impacts the emotional, psychological, and psychosocial aspects of those who want to have a child.Since there are few studies on the psychological impact of the COVID-19 pandemic on couples grieving for perinatal loss, this research aimed to survey this experience.Between 2020 and 2021, in Italian provinces highly affected by the COVID-19 pandemic, 21 parents participated: 16 mothers  and 5 fathers , among which there were 4 couples.A mixed-method design was used through self-report questionnaires and in-depth interviews. Accompanied by a sociodemographic form, the following questionnaires were administered: Prolonged Grief-13, the Parental Assessment of Paternal Affectivity (PAPA) (to fathers), the Parental Assessment of Maternal Affectivity (PAMA) (to mothers), the Dyadic Adjustment Scale short version, the Daily Spiritual Experiences Scale, and the Impact of Event Scale-Revised. The texts obtained through the in-depth interviews underwent thematic analysis.Fifty per cent of participants suffered from Post-Traumatic Stress Disorders (PTSD) symptoms and 20% suffered from relational dyadic stress. Four areas of thematic prevalence emerged: psychological complexity of bereavement, the impact of the COVID-19, disenfranchisement vs. support, and spirituality and contact with the lost child. Participants interpreted their distress as related to inadequate access to healthcare services, and perceiving the pandemic restrictions to be responsible for less support and lower quality of care. Furthermore, they needed psychological help, and most of them were unable to access this service. Spirituality/religiosity did not help, while contact with the fetus and burial did.It is important to implement psychological services in obstetrics departments to offer adequate support, even in pandemic situations. Perinatal loss, comprised of experiences of miscarriage, stillbirth, and neonatal death, is a highly traumatic experience characterized by stressful conditions aggravated by the psychological dissolution of expectations regarding raising a child and developing a parental role . ExperieThe suffering of loss may be exacerbated and prolonged due to lack of social or partner support , an unsaThe aims of the research were to investigate the experiences related to the impact of the COVID-19 pandemic on mothers and fathers’ grief who experienced a perinatal loss between 2020 and 2021. Changes in social and couple relationships, maternal/paternal affectivity and satisfaction, trauma, grieving strategies, and un/helpful factors were detected.They were recruited at healthcare centers throughout Italy  by healthcare professionals , collaborating with the Observatory of Perinatal Clinical Psychology at University of Brescia.Psychotherapists collaborating with family counseling centers identified potential participants and indicated them to the researchers of this study. The inclusion criteria were as follows: the loss occurred from March 2020 to March 2021; being able to speak the Italian language. Mental health was the main exclusion criterion: participants were not undergoing psychiatric or psychopharmacological treatment. Recruitment of participants ended when the topics brought in by the research participants became repetitive and the data reached theoretical saturation .Twenty-one parents participated: 16 mothers  and 5 fathers . Among them, 86% had Italian nationality; 62% had a university degree, 33% had a high school diploma and 5% had a middle school license; 95% is employed; 52.4% had a medium-high economic condition, 33.4% a modest one and 14.2% some economic problems; 95% are married or cohabiting. Healthcare professionals and participants (mothers and fathers) took part in the study voluntarily and without compensation. The recruited subjects were given an Information Note with a description of the aims of the study and those who agreed to participate were asked to sign an Informed Consent Form. To protect their privacy, a code was assigned to participants, with which they became part of the study (they could authorize the communication of their names to the research centers). The research followed APA Ethical Principles of Psychologists and Code of Conduct. Participants were explained in detail all the objectives of the research and the methodology of analysis used. The study was approved by the Ethics Committee for Experimentation of the University of Padua (n. 53FB052AA456203CE7F4E9C76EBAFAEE).A mixed-methods design was adopted through the use of a self-report protocol and the implementation of an in-depth interview .A sociodemographic form was used to collect age, nationality, education, profession, marital status, pregnancy data , and perceived level of support from family, friends, and healthcare services.Prolonged Grief-13 (PG-13) ( (PG-13)  comprise (PG-13) .The analysis of internal consistency confirms that the single factor structure is highly satisfactory, with Cronbach’s α coefficient equal to 0.93. Therefore, the extraction of the only factor and good reliability analysis leads to the conclusion that the PG-13 can be considered a valuable instrument for the evaluation of the PGD in clinical practice . In currThe Parental Assessment of Paternal Affectivity (PAPA)  for mothers consisted of 10 items that investigated 8 dimensions: anxiety, depression, perceived stress, irritability/rage, relational problems , alterations in illness behavior , physiological disorders , addiction disorders, and behavioral acts. The instrument thus makes it possible to identify fathers/mothers’ perinatal affective disorders, respectively.y (PAPA)  uses a 1P = 0.05) and single scale scores with many scores on CES-D, SCL-90-R, ASA, PSS, and DAS. Preliminary data of this Italian validation study confirm the PAPA as a useful tool for the screening of paternal affective disorders in the perinatal period  ( (DAS-4)  was usedThe DAS-4 proved to be informative at all levels of couple satisfaction. Compared with the 32-item version of the DAS (DAS-32), it was as effective in predicting couple dissolution and was significantly less contaminated by socially desirable responding . In the The Daily Spiritual Experiences Scale (DSES) (e (DSES)   (r = 0.89–0.94) and internal consistency (Cronbach’s α) for each subscale  are acceptable. Correlations have been found to be high between those of the IES-R and the original IES for the intrusion (r = 0.86) and avoidance (r = 0.66) subscales, which supports the concurrent validity of both measures ( (IES-R)   who clearly defined coding rules in advance, thus enabling the creation of a shared analysis codebook. There was total agreement between the two researchers. After they reached agreement on the interpretation, another researcher discussed the procedure and the results obtained. Finally, after modifications were agreed upon by the three researchers, the final structure of the report was defined.The paper-and-pencil analysis operations were then integrated using the computer program qualitative analysis software Atlas.ti  which haWith respect to participants, there were four couples: Isabella–Antonio, Cristina–Ernesto, Laura–Giulio, and Valeria–Pietro. Five participants did not attend the interview .M = 18.7, SD = 12.4, Range = 2–42), the average number of previous pregnancies is one , 43% had previous experience of miscarriage and for almost half of participants it was the first child. One-third of the group did not perceive sufficient support from family members, their network of friends, and especially the healthcare service. Half of the mothers stated that they received good support from their partners, while half defined it as absent or scarce.With respect to the sociodemographic variables, the average gestation period was about 19 weeks (IES-R: Seven participants (44%) present symptoms usually similar to post-traumatic stress disorder.PG-13: All participants met criterion A, as all had experienced bereavement; 31.3% met criterion B, relating to separation distress, while criterion C, relating to the duration of bereavement symptoms, was met by 43.8%. Criterion D, relating to the presence of cognitive, emotional, and behavioral symptoms, was met by only 6.3%, and criterion E, relating to significant functional impairment 6 months after loss, was met by 31.3% of participants. However, none of the participants met all five criteria necessary for establishing the diagnosis, so none of the mothers showed complicated grief.The PAMA: Those who had a score above 40  were at risk of an affective parental disorder.The DSES: 50% of the participants had a high perception of transcendence, 19% had a slight perception, and the remaining 31% had little or no perception.The DAS-4: 3 participants (19%) had a score below 13 and suffered from couple dissatisfaction.The sociodemographic form showed that, for one, this was the first experience of pregnancy. Regarding the analysis of social support, for four of the fathers, the support received from family was good; in relation to the friendship network, three described it as good, while two described it as sufficient. Concerning the health services, two felt that the support was absent, one described it as poor, one as sufficient, and one as very good. Four noted the lack of psychologists and assistants. Four fathers pointed out that they could not access hospitals or have contact with doctors and paramedics. The lack of support was blamed on the COVID-19 restrictions.IES-R: Three (60%) present symptoms usually similar to post-traumatic stress disorder.PG-13: All participants met criterion A because they had suffered from grief. None met criterion B relating to separation anxiety. Criterion C, the duration of symptoms related to grief, was met by one. None met criterion D, relating to the presence of cognitive, emotional, and behavioral symptoms. None met criterion E, relating to a significant functional impairment 6 months after the loss. Thus, none of the participants fulfilled all five criteria necessary for the diagnosis, and none of the fathers showed a significant picture of prolonged bereavement.PAPA: All participants scored below 40; thus, none of the participants were at risk of developing an affective parental disorder.DSES: Two of the participants reported a slight perception of transcendence, while another two described it as moderate; one reported a high perception.DAS-4: No participants scored below the clinical cut-off, indicating the absence of clinical distress related to their relationship with their partner.r = 0.52), intrusiveness (r = 0.57), hyperarousal (r = 0.55), and with the total (r = 0.68). The PAMA/PAPA total correlates positively with the PG-13 total score (r = 0.55) and IES-R intrusiveness (r = 0.44). The DAS-4 total correlates negatively with IES-R total (r = −0.50) and IES-R avoidance (r = −0.46). The DSES total positively correlates with IES-R avoidance (rho = 0.64). Considering socio-demographic variables, high education and high level of economic conditions correlate negatively with IES-R avoidance  while the presence of previous children correlates positively with IES-R hyperarousal (r = 0.53) and with IES-R total (r = 0.46). Furthermore, considering the pregnancy data, gestational week correlates positively with IES-R hyperarousal (r = 0.71) and with IES-R total (r = 0.45). Finally, considering perceived support, high support from family and high support from friends correlate negatively with IES-R avoidance . Spirituality was significantly correlated only to IES-R Avoidance (r = 0.64)  .t = 2.44, df = 19, p = 0.012) and support of health services . Male participants are older than female participants , while male participants perceived less support of health services than female participants .Gender differences on all variables—distress measures, maternal/paternal affectivity, couple satisfaction, spirituality, socio-demographic variables, pregnancy variables, and perceived support variables—were analyzed using the test t for independent samples. No gender differences were found except for age of participants  and previous children with PG-13 total . Male participants showed highest negative correlation between education and IES-R avoidance than female participants , while they showed highest positive correlation between previous children with PG-13 total .Gender differences on correlations were analyzed by calculating the r-to-z transformation to compare correlations across men and women. No gender differences were found except for education with IES-R avoidance correlation  stated: “I have hallucinated pains, and this and this prevents me from returning to normal. My body and I are still quarreling.” The sense of an empty and arid womb was particularly painful, as described by Roberta (DSES = 40): “After the curettage, what you feel is a sense of emptiness, because you perceive that your body was changing, your abdomen swelled, and then a great sense of emptiness overwhelms you.” According to her, “My husband was worried, first of all, whether I would recover, and that’s why he didn’t want to grieve, hoping to support me.” Marianna said: “The body can resist physical pain, what is unbearable is the internal suffering. Something breaks inside me.” Valeria , who also had a previous miscarriage/stillbirth, and the new baby was born dead after 9 months due to dystocia, narrated: “I was petrified, I couldn’t say anything, think about anything, or cry. Even today, at times, I deny what happened. “She tried to understand her partner Pietro”: “He’s a racer, so he’s raced a lot, worked a lot, outlined technical projects. I understood that this was his way to face the loss.” The participants also suffered from intense anger. Flavia , who had experienced a previous miscarriage, reported: “I’m absolutely angry because, very nicely, the gynecologist told me, ‘Well madam what do you want me to tell you, there is no longer the baby’s heartbeat.”’ Her relationship with her husband went into crisis: “Because of constant guilt and anxiety. In the end, I had to give him an ultimatum.” Miriana stated, “I am angry. If they had realized before that the fibroma was already big, what would have happened?” And Flavia said: “I am angry with karma and with God. Two very dear friends of mine found out they were pregnant, but they did not accept it. Seeing them not happy and me instead who would have strongly wanted it disturbs me profoundly.” Pietro, Valeria’s husband, similarly said: “I had never felt an emotion like this, I think the right name is anger; it was explosive at the beginning, I felt this energy, I was not willing to tolerate this loss’.” The common emotion between mothers and fathers was a sense of guilt. Additionally, fathers showed an intense feeling of guilt, as in the case of Ernesto , who had to make a difficult choice when, with his wife Cristina, he discovered that the fetus had a severe malformation at the fifth month: “It was a terrible choice that I didn’t expect to make. I still live with this choice in my mind. I have regret, and the doubt persists. Did we get it right, or did we get it wrong?” Fathers also felt intense existential suffering, as in the case of Antonio (IES-R = 41), who affirmed that “I always ask me what I have lived, what happened, what it could have been. Now there is a feeling of sadness, of emptiness, of a physical lack, because I wanted another child.” However, the most important feeling was the sense of responsibility and a need to be useful to recovering normalcy, as affirmed by Alberto (IES-R = 41): “She prefers to talk about it to get over that moment, while my personal protection is to deflect the subject. […] I also had to take care of our son, and it wasn’t easy to explain to him what had happened”; and Pietro “My reaction is to do, to act, my wife on the other hand needs time, to stay calm, to put her thoughts in order, to try to accept this loss.”The second sub-area was inherent to confusion related to one’s parental identity, especially among mothers who have had previous miscarriages or stillbirth. The participants were confused about their role, they did not know whether they should consider themselves mothers or not. Sofia, who had already previously had two similar experiences, said, “I wasn’t able to manage pregnancy. Ambivalence characterized my entire pregnancy; I was pregnant and I drank a glass of wine, I was pregnant and I started to smoke again, I was pregnant and I took a drug to sleep, always with the thought that I was doing damage, that I was not an adequate mother. Moreover, I didn’t want to see the baby during expulsion, and I said, ‘what kind of mother are you? Why don’t you want to see your child?’ So finally, I chose to see him.” She also said, “It is not the events themselves that upset me the most, but seeing becoming a mother fade away, which is becoming more and more impossible by now; all this gives strong frustration.” Similarly, Marianna, who had a previous miscarriage, affirmed, “I want a child, so I asked myself what the meaning of my life was. I thought there wasn’t one; I wasn’t working and, above all, I wasn’t a mother.” Gioia also had the same feeling: “For a while, I feel like a mother who has a child. On these days, I would wonder, if 1 day I will have children and they ask me how many children you have had, will I have the courage to count the miscarried ones? I’m really confused.” Cristina (DSES = 47) said: “I had the perception that I was not a mother because I had abandoned my child, both after the birth and after the burial.”The second thematic area was related to the concomitance of pandemic and miscarriage and stillbirth. It was divided into two subareas: the loneliness experienced by both partners due to restrictions and the difficulty in accessing services.The first subarea considered the experiences of mothers and fathers, who could not be near their partner during visits, thus fueling a sense of loneliness and exclusion. The couple also did not have the opportunity to confront each other when making important decisions as the restrictions did not allow fathers to attend the various visits. Flavia, who had problems related to the infections, tells: “I was terrified of being pregnant, alternating with happiness at the news after the COVID nightmare, but given everything that was happening, I was terrified that something might happen.” The other participants reported that the main consequence of the pandemic was that they had to make their visits alone and be hospitalized and operated on in the absence of their partner or parents, as well as having to make important choices alone, as in the case of Antonio’s wife Isabella, who said, “The phone, the video call maybe, were not enough, and maybe the most fundamental part for me was the emergency room, when you really had to realize what was happening, and my husband was out there. It made me so sad.” Fathers also tell, who, on the other hand, suffered from an inability to attend the visits and participate in their partners’ hospitalizations, exacerbating their sense of helplessness, as described by Antonio: “I was just there waiting for my wife for 48 h, I did not have the ability to access the hospital. My biggest regret is not having seen my son and not having been with my wife in that terrible moment.”The pandemic restriction also exacerbated the distress, as explained by Cristina: “It was difficult to go for a walk, it seemed to me that the house was closing in on me, as if the walls were collapsing and the pain was becoming even more vivid,” and by Roberta: “Without meeting people, I had too much time to think, and this had broken me down. I felt that my head would explode because I was suffocating.”A huge sense of protection toward the partner derived from this situation, as described by Giulio (DSES = 40) with respect to his wife Laura: “Mainly I was worried, not so much for the loss of the child, but for what was happening to my wife. I was worried about her physical and psychological conditions,” and by Antonio: “A huge feeling of protection toward my wife took over, because I wanted her to feel well since the beginning, regardless of what could have happened with the pregnancy.”The second subarea considered the difficulty in accessing services and medical examinations. Moreover, it was very difficult to access the necessary controls, as described by Marianna: “My gynecologist told me that she couldn’t receive any more patients for examinations. Trying to call the hospital, I received only negative answers. Everything was blocked; the answer I was given was to go to a private professional, and this upset me further.”Furthermore, as stated by Ernesto: “There was a lack of concrete support: finding the doctors, going to the hospital. The exams were continuously postponed, extensive waiting times, calling and not finding anybody,” and by Alberto: “My wife was not assisted at all, and the operators did not even let me stay in the waiting room.”This area is divided into two subareas: disenfranchisement and social support.The first subarea concerns disenfranchisement, which caused great suffering. Participants did not always feel their grief and bereavement was acknowledged from the outside and sometimes received superficial or devaluing comments about the experience from acquaintances, friends and family members and even from their partners, a factor that exacerbated the pain of the moment. Marianna perceived her partner as absolutely absent and detached: “He didn’t suffer as much as I did, and he didn’t talk about it, because it was an uncomfortable subject. For him, this is not a problem.” In Flavia’s opinion, “People don’t give importance to this experience and think that I already have a daughter and so I must be satisfied! For this reason, I prefer to avoid people who know me.” Similarly, Marianna did not want to tell anyone about this loss: “I decided not to talk to anyone about my condition for fear of not being understood. However, I needed someone to ask me if I needed help.” According to Ernesto, “You can only talk about it if someone shows interest. This wound is very painful and the others don’t understand it, so they can’t help me.” Similarly, Pietro said, “Some people feel the need to ask questions, disrespecting you. Their language goes faster than their thoughts because they are curious. There is a terrible level of emotional ignorance and lack of empathy.” The medical staff also proved unable to recognize the mothers’ suffering, as Cristina continued: “The doctors don’t recognize your pain. They are cold, detached, even when they give you the bad news.”The second subarea concerned the importance of support. If, on the one hand, participants did not always feel understood by others, receiving comments from outside aimed at minimizing the loss, on the other hand, they always found figures within their own circle of friends, family or care team who supported them. For many of them, social support was an important protective factor in the grieving process, as described by Isabella: “I was lucky because the nurse was very close to me and allowed me to go out to see my husband,” and Miriana: “I met a fantastic team. Everyone tried as much as possible to overcome the limitations of the pandemic to make me feel more comfortable. Their sense of humanity prevailed.” Those who were supported by mutual-aid groups had a great advantage, as Valeria emphasized: “Participating in these groups allowed us to find out that many other couples had the same experience, and we found great support in these people especially, because they understand.”Most fathers and mothers, however, considered the support offered by family and friends as adequate and comforting.Religiosity/spirituality was not particularly effective in supporting the grief experience. Sofia  stated, “I don’t have a religion to take refuge in. I think things are the way they are, and I deal with them the way they are. I consider myself unlucky and do not consider any existence of this baby.” In the same vein, the fathers also have a low level of spirituality. According to Giulio (DSES = 40), “‘It had to be like this,’ it is a scenario that is contemplated when you think about having a child, it is a natural thing that can happen.” Similarly, Ernesto : “I don’t find support in religion and I don’t feel like a particularly unfortunate case and I’m not desperate. I feel very lucid because I believe that this is a human thing, that it can happen.” Both lower and high levels of spirituality are accompanied by a positive experience of contact with the fetus and the funeral ritual, as in the cases of Cristina (DSES = 47): “I’m so pleased, I wanted to see it because now it’s not nebulous; I have a concrete face to remember, which at the beginning occupied an immense space in my mind and is now slowly getting smaller, taking the right proportions,” and Valeria : “I needed to touch, to see, to give a face, to give a weight, even holding her in my arms helped me. I would have lacked contact with reality if I had not seen her. […] In this way I closed the circle,” as well as Miriana: “Being able to touch and hold him allowed me to understand what happened,” and Flavia (DSES = 51), who also treasured the funeral: “In this way I was able to say goodbye to him, as we do to those who have lived with us.”For the fathers, it was easier not to celebrate any funeral, as in the case of Ernesto (DSES = 29): “The funeral makes sense if you can remember who died, if you do it for someone you lived with. I knew he was going to be stillborn because we had chosen to have him stillborn because of his severe malformation, so it was better not to proceed further,” and Alberto (DSES = 58): “I suffered a lot for this loss. I preferred not to have any funeral because if I had to think about the burial, it would have been much harder.”This study adopted a mixed-method research design. The quantitative analysis exhibited that a large number of participants presented most of the symptoms attributable to post-traumatic distress, moreover, several participants showed low levels of couple satisfaction and disturbances in the affective parental sphere. Correlational analysis revealed significant relationships between the presence of symptoms of post-traumatic stress disorder and the dimensions of hyperarousal and intrusiveness. Although all participants are suffering intently from the loss, none could be diagnosed as having complicated grief, and the total PG-13 score correlated with all the dimensions of the IES-R, showing that a higher level of distress corresponded to a greater difficulty in processing the loss. These results are in line with the literature emphasizing that miscarriage is an extremely traumatic experience . The resFrom the qualitative analysis, four areas of thematic prevalence emerged, with some subareas. Psychological complexity of bereavement was the most important because participants preferred to describe their psychological experience. It was composed of two subareas: the grieving experience and the couple relationship. The second area, the impact of the COVID-19, was composed of two subareas: the experiences of mothers and of fathers. The third, disenfranchisement vs. support, considered the two experiences in two different subareas. Finally, spirituality is positively correlated with avoidance, and this result indicates the ambivalent role of this dimension, that did not seem to help parents in grieving. Indeed, this dimension did not signify the contact with the lost children and whether the relationship with transcendence influenced the relationships with them. With regard to grieving, it was confirmed that there were different ways of dealing with loss between mothers and fathers. The women considered it necessary to have time for introspection and reflection, and it seemed to help to have positive conversations. Conversely, the male tendency was to adopt elusive strategies, avoiding talking about it or engaging in other activities that allowed them not to focus on the problem . SpecifiThe second thematic area was divided into the negative impact of COVID-19 on both maternal and paternal bereavement experiences because of indirect effects related to the difficulties in accessing healthcare services and follow-up visits, the lack of adequate support from social and healthcare personnel, and the inability of fathers to assist and offer support at the time of their wives’ hospitalizations. None of the participants, in fact, felt that Covid-19 had a direct effect on their pregnancy, even in cases where the women were infected. The main consequence of the pandemic was found in the fact that mothers were forced to make their visits alone, as well as being hospitalized and operated on. In fact, all of this took place without the presence of their partners or parents: this context burdened their experience and exacerbated their sense of loneliness and abandonment. Moreover, in some cases, the women found themselves making important decisions alone, without being able to communicate except by telephone. Participants felt, precisely because of the COVID, that they had lost an important piece of their experience, namely sharing with their partner. Finally, they felt very frightened about not being able, in some cases, to undergo check-ups on time.Finally, the presence of Covid also weighed on the grieving process; the restrictions due to the infection prevented many from going out, distracting themselves, resuming work and having contact with the outside world.The results are in line with the literature , which sThe interviews also reveal that men feel they have to silence their pain, as their role is to accept and listen to their partner’s suffering. This is in line with the literature according to which men perceive that they cannot share their pain with their partner ; furtherDespite spirituality/religiosity being widely considered very helpful in managing grief , in thisThe results of the study show how the pandemic negatively impacted couples’ experience of miscarriage due to indirect consequences related to difficulties in the healthcare environment and restrictions imposed to prevent contagion. The restrictions exacerbated the negative effects of the trauma by making relationships with healthcare professionals more difficult and limiting contact with friends and family. In addition, decreased contact with participants’ religious communities diminished the power of that social support. The need for support was not compensated for by adequate psychological services either. It is imperative to equip gynecology and obstetrics departments with at least one staff psychologist because this professional could have provided the necessary help, even in the most difficult moments of the pandemic.The most important limitation of this study is the fact that the majority of fathers did not want to participate, so it is possible that the results obtained by those who did participate are not indicative of a specific male method for dealing with this loss. In addition, The group of participants was small due to the fact that some parents who were contacted by the healthcare professionals did not agree to participate in the study because the perinatal loss event was traumatic and painful and they did not want to talk about it again. Therefore, the small number of participants did not allow for more in-depth statistical analysis, and results cannot be generalized. Furthermore, most of the sample is Italian, has a university degree, and medium-high economic conditions. Then, results are not representative of a larger population.Additional studies could further survey the relationship between grieving and gestational age and with religiosity/spirituality.The present study has as its future objective the administration of the instruments at a distance of 6 months: it would be useful to carry out a follow-up with the aim of verifying the occurrence of significant changes, also in relation to the evolution of the pandemic context. Furthermore, another future objective is to extend the research to a larger number of participants, who have also suffered perinatal losses beyond the time period considered so far; connected with this objective, extending the number of participants could make it possible to recruit a substantial number of couples, which would allow an analysis not only of individuals, but also between partners.The participants also pointed out that social support was crucial for them in the process of processing the loss but that in some circumstances the social network was not able to recognize the underlying suffering of the loss m Considering mothers’ need to express their grief and to receive strong support, together with the need to mentally and psychologically reorganize the way they represent their deceased child, further research should focus on what professional interventions could be particularly helpful in supporting the grieving process, especially by social workers who can improve social support. Finally, future research should investigate the reactions of siblings and fathers to perinatal loss, since this type of bereavement is still poorly recognized by society, in order to develop a more appropriate support system for them as well.The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.The studies involving human participants were reviewed and approved by the Ethics Committee for Experimentation of the University of Padua. The patients/participants provided their written informed consent to participate in this study.IT and LC: conceptualization, methodology, writing—review and editing, and supervision. EI and AT: software. IT, LC, AT, GL, LR, and EI: analysis. IT, LC, GL, EI, and AT: investigation. GL: resources. IT, LC, EI, GL, AT, and LR: data curation. IT, LC, GL, EI, AT, NT, and LN: writing—original draft preparation. IT, LC, EI, and AT: project administration. All authors have read and agreed to the published version of the manuscript.


Second Thoughts on First Thoughts where we ride the learning curve of one of our expert colleagues. In this session, we chat with one of the true leaders in our field, Robert Singer (Video). He talks about how he has moved beyond the classic open coronal forehead/brow lift to a palette of “kinder, gentler” strategies and still achieved similar outcomes.Welcome to another edition of The interview follows the format of the 5 Ws in investigative reporting: Who, What, Where, When, and Why? as a shout-out to the longest-running Canadian TV show of its kind, “W5.” We hope you enjoy this brief but enlightening interview.ojac092_Supplementary_DataClick here for additional data file.


Traditional medical neuroanatomy/neurobiology textbooks teach that pain is generated by several ascending pathways that course in the anterolateral quadrant of the spinal cord, including the spinothalamic, spinoreticular and spinoparabrachial tracts. The textbooks also teach, building upon the mid-19th century report of Brown-Séquard, that unilateral cordotomy, namely section of the anterolateral quadrant, leads to contralateral loss of pain (and temperature). In many respects, however, this simple relationship has not held up. Most importantly, pain almost always returns after cordotomy, indicating that activation of these so-called “pain” pathways may be sufficient to generate pain, but they are not necessary. Indeed, Brown-Séquard, based on his own studies, eventually came to the same conclusion. But his new view of “pain” pathways was largely ignored, and certainly did not forestall Spiller and Martin's 1912 introduction of cordotomy to treat patients. This manuscript reviews the history of “pain” pathways that followed from the first description of the Brown-Séquard Syndrome and concludes with a discussion of multisynaptic spinal cord ascending circuits. The latter, in addition to the traditional oligosynaptic “pain” pathways, may be critical to the transmission of “pain” messages, not only in the intact spinal cord but also particularly after injury. Noordenbos  “It is aLivingston  “In the Several years ago, I was invited to lecture on “The History of Neuropathic Pain” at the Berlin meeting of the Neuropathic Pain Special Interest Group. I assumed that I was chosen to present this lecture because most folks in the audience were born before any of the history took place. Interestingly, the word neuropathic did not enter the neurology literature until the latter half of the 20th century. Rather, the existence of nerve injury-induced pain was first recognized by Weir Mitchell during the American Civil War . Of course, history does have a tendency to repeat itself, which I presume is what led to my invitation to write this piece, in essence on the History of the Pain Pathway, or to be more inviting, focusing according to our editor, Tony Yaksh, on pivotal moments that defined the Pain Pathway. This is an interesting and important topic, and as someone who believes that “The Bane of Pain is Plainly in the Brain” , the topWith these caveats in mind, I will take readers through a review of the association of different ascending pathways that course in the anterolateral quadrant to the generation of pain. I was helped significantly by colleagues as well as by a very detailed historical record described in a wonderful book by Lenz et al. . The stoSubsequent studies narrowed down the spinal cord pathways that carry information leading to pain. These were comprehensively described in Gowers' 1886 two volume compendium . He wrotInterestingly, detailed studies of the anatomical basis of the pain relief from anterolateral cordotomy only came many years later, by Otfrid Foerster , a neuroThe focus on these major anterolateral quadrant ascending pathways is understandable, and activation of these pathways does appear sufficient to generate pain. But which pathway actually carries the input that generates pain? And which brain areas engaged by the pathway are critical? Here the studies of William (Bill) Mehler, a student of Walle Nauta, who developed the silver staining methods that greatly increased the ability to detect degenerating fibers, are incredibly relevant. Mehler published the most beautiful and most comprehensive descriptions of the supraspinal targets where degenerating terminals are located after cordotomy , 17. HisAfter the Spiller and Martin report, anterolateral cordotomy became rather commonplace for chronic pain management, even in non-terminal cancer pain patients. What is puzzling is that despite considerable evidence and concern that pathways that course in the anterolateral quadrant are neither the sole, nor even a necessary route through which pain is generated, the procedure continued to be performed. Cordotomy does produce pain relief contralateral to the lesion, but rarely, if ever, produces long lasting pain relief. For example, Cowley and Hitchcock  reportedafter it was cut!Of particular interest is that recurrence of pain after cordotomy often does not appear in the region of the body where the pain that precipitated the surgery occurred. Peter Nathan, with whom, as a postdoc, I saw patients at the National Hospital for Neurology and Neurosurgery at Queen Square in London, elegantly discussed the recurrence of pains. In a 1956 article , he wrotBesides the recurrence of pain, there are numerous adverse effects associated with anterolateral cordotomy, including post-cordotomy dysesthesia, a severe central pain condition, potentially more severe than the pain that precipitated the cordotomy  and alloFrom an historical perspective it is of particular interest that the concerns about a “pain pathway” in the anterolateral quadrant were raised by Brown-Séquard, almost two decades before the first cordotomy was performed. Specifically, despite Gowers' apparent confirmation of Brown-Séquard's earliest conclusions as to the contralateral transmission of “pain” information in the anterolateral quadrant, in a three-page paper published in 1894, the year that he died, Brown-Séquard rather emphatically rejected his own conclusions concerning the contribution of a crossed pain pathway . His newStudies many years later provided further support for Brown-Séquard's new view. Derek Denny-Brown , a brillthe pain pathway” if pain returns? Second, what pathway or pathways underlie the return of the pain? The focus these days, at least in rodent studies, has been on dorsal horn projection neurons, but the very different receptive field properties of lamina VII spinoreticular neurons may be particularly relevant  to post-herpetic neuralgia, post cordotomy girdle pain and even to phantom limb pain.The most detailed description of a multisynaptic spinal cord “pathway” can be found in a remarkable book, “Pain,” written by William Noordenbos, a neurosurgeon from the Netherlands . Noordenth century, when he wrote that “it is probable that some impulses that we do not feel do not cross. We must never forget that there is strong reason to believe that only a minority of the impulses that traverse afferent nerves affect our consciousness.”Is there any relevance to “reintroducing” a multisynaptic pathway to contemporary preclinical pain research scientists, who unquestionably focus on the long ascending “oligosynaptic” pathways that originate from the major spinal cord projection neurons? Unquestionably, there are monosynaptic and polysynaptic inputs from the periphery to these projection neurons, which contribute to the acute pain experience. There is also an enormous literature on the contribution, in the setting of tissue or nerve injury, of dorsal horn interneurons that enhance the input to the major projection neurons, via central sensitization processes . This inDo these multisynaptic pathways also underlie the fact that unilateral injury can result in bilateral engagement of spinal cord nociceptive circuits, a finding with an important clinical correlate, namely in the appearance of contralateral pains in patient with CRPS, or in the induction of allochiria. Or, perhaps this pathway underlies the reappearance of pain after unilateral hemisection by a hemisection made caudal to the first one, which Brown-Séquard observed. Do collaterals of the projection neurons, along their ascending course to the brain, engage short chain multisynaptic circuits within the cord, taking a route that could not only bypass the hemisections but engage circuits both ipsilateral and contralateral to the lesions? That hypothesis is a central theme in the Noordenbos book. There is certainly evidence that collaterals of lamina I neurons engage local circuits at the level of the cell body, but Szucs et al.  concludeWhat then is the significance of this historical review of the pain pathway? Yes, there are “pain” pathways in the anterolateral quadrant, activation of which, in the normal setting, generate pain experienced on the contralateral side of the body. On the other hand, although activation of these anterolateral quadrant located pathways are sufficient to generate pain, their activation is clearly not necessary. In fact, in the setting of tissue or nerve injury, there appear to be many complex ascending circuits, including multisynaptic ones, that can transmit the information that generates pain. These considerations provide a very different view of spinal cord “pain” pathways, and importantly, may be relevant to the development of novel pharmacotherapeutic approaches to ameliorate pain, not only by targeting the projection neurons at the origin of the major ascending “pain” pathways, but also by interfering with the interactions between the projection neurons and what to date are poorly studied multisynaptic spinal cord “pain” pathways. To paraphrase Livingston , there mThe author confirms being the sole contributor of this work and has approved it for publication.This work was supported by a grant from the NIH R35 NS097306 and Open Philanthropy.The author declares that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The handling editor TY and the reviewer HF declared a shared affiliation with the author at the time of review.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


This review focuses on the lived experiences of chronic conditions among African communities in the Global North, focusing on established immigrant communities as well as recent immigrant, refugee, and asylum-seeking communities. We conducted a systematic and narrative synthesis of qualitative studies published from inception to 2022, following a search from nine databases—MEDLINE, EMBASE, PsycINFO, Web of Science, Social Science Citation Index, Academic Search Complete, CINAHL, SCOPUS and AMED. 39 articles reporting 32 qualitative studies were included in the synthesis. The studies were conducted in 10 countries  and focused on 748 participants from 27 African countries living with eight conditions: type 2 diabetes, hypertension, prostate cancer, sickle cell disease, chronic hepatitis, chronic pain, musculoskeletal orders and mental health conditions. The majority of participants believed chronic conditions to be lifelong, requiring complex interventions. Chronic illness impacted several domains of everyday life—physical, sexual, psycho-emotional, social, and economic. Participants managed their illness using biomedical management, traditional medical treatment and faith-based coping, in isolation or combination. In a number of studies, participants took ‘therapeutic journeys’–which involved navigating illness action at home and abroad, with the support of transnational therapy networks. Multi-level barriers to healthcare were reported across the majority of studies: these included individual (changing food habits), social (stigma) and structural . We outline methodological and interpretive limitations, such as limited engagement with multi-ethnic and intergenerational differences. However, the studies provide an important insights on a much-ignored area that intersects healthcare for African communities in the Global North and medical pluralism on the continent; they also raise important conceptual, methodological and policy challenges for national health programmes on healthcare disparities. The global burden of NCDs, such as diabetes, hypertension and cancers, has a disproportionate impact on African populations on the continent and in the African diaspora , 2. ReseA limited set of studies and reviews report multiple barriers to healthcare for African communities in Europe, North America and other countries in the Global North, including inequitable access to healthcare services, language barriers in service delivery, and (conscious and unconscious) biases in diagnostic and treatment practices , 6, 7.There is yet to be an attempt to comprehensively identify, synthesize and theorize evidence of these lived experiences; of how communities living with chronic conditions make sense of their conditions, experience their conditions and manage treatment and care. Synthesizing the available evidence on chronic illness experiences and care will aid a more nuanced understanding of shared and divergent patterns of lived experiences of chronic conditions within African diaspora communities, as well as responses–such as spiritual, psychological, psychosocial, and political—to living with chronic conditions that provide insights for developing context-specific, responsive and equitable chronic care models.The aim of this review was to examine the lived experiences of chronic conditions among African communities in Europe and North America, and other countries in the Global North, focusing on established immigrant communities as well as recent immigrant, refugee and asylum seeking communities. We were interested in meanings, experiences and illness action from the perspective of individuals living with chronic conditions.Research on the continent and diaspora suggest African communities hold complex chronic illness beliefs that incorporate medical, cultural and common sense ideas, a social psychological phenomenon called ‘cognitive polyphasic’—and defined as a process whereby individuals and communities draw on diverse, and even conflicting, models of knowledge to make sense of new phenomena or re-examine old phenomena with or without psychological tension . These cWe had three questions: how did individuals living with chronic conditions understand their condition(s) (eg. lay theories about causes and nature of conditions)?; how did individuals experience their condition(s) (e.g short-term and long term impact of living with chronic conditions)?; what did individuals do about their condition(s) ?S1 Table). The protocol was registered on PROSPERO (CRD42019162565). Since this was a systematic review, ethical approval was not sought.This review was conducted and reported in accordance with PRISMA guidelines  extension for screening and reporting  12]. We. We12]. Peer-reviewed qualitative studies that explored and reported on the lived experiences and systems of care for chronic conditions for Africa communities in the Global North were included. Studies that used qualitative methods such as interviews, focus group discussions, and observations were included. Mixed methods studies were also included; however, only the qualitative aspects of the study were extracted for analysis. Studies that were quantitative by design or did not report any information relating to lived experiences of chronic conditions or systems of care were excluded. Studies that reported on the lived experiences of patients based on the views of care-givers or health care professionals were also excluded in this review.The search was carried out by one reviewer. All studies from the databases search process were exported into EndNote for screening. The screening process was carried out in four stages. The first involved the removal of duplicates aided by EndNote. Applying the eligibility criteria, the second stage was based on title relevance. Thirdly, all articles retained after title screening were retained for further screening of abstracts for potential relevance and eligibility—this was conducted by two reviewers. Finally, full articles were retrieved and screened for eligibility. Where there were disagreements in reviewers’ decisions to include or exclude a potential study, a third reviewer was consulted.S3 Table) , they have it. So I think the lifestyle, the competition, the rent, everything affects their life. Sometimes even if you are working, sometimes you cannot afford to pay the rent. It is expensive. So it adds up to the stress... then stress is another cause. ra, 2017 )“But you know our culture, it was thought to be something else, someone has bewitched me so I concluded that something was wrong” “There are some people who get possessed, we believe in that. Those people that were crazy, you read Qur’an on them, you do a lot of imam talk, and you pray for them.” . I thought it will go [cure] so I took medicine for some time... I used the herbal medicine in the beginning but it [HTN] didn’t all go... it [BP] was always up, the nurse advised me so now, I don’t joke with my medicine.” I was in a desperate state at this point and was willing to do anything to cure my diabetes. I drank my own urine, drank ewuro  is also known as bitter leaf), ate onions and garlic but no cure”. In the study conducted among African-Surinamese living with Type 2 diabetes in the Netherlands, one participant did not that view diabetes as chronic but rather a temporary illness I don’t believe I have diabetes. It’s just there for a little while (70 year-old African Surinamese woman in Kohinor 2011a net…we hear about the medicines from the Ghana FMs... oh, you family member can buy and send to you if you send the money 3.1.1.1 How specific chronic conditions are understood. Three studies examined definitions and understanding of specific chronic conditions: hypertension, diabetes, stroke, cancers and mental illness. Among Ghanaians in the Netherlands and East Africans in the UK, hypertension was commonly defined as ‘ill heart’ or heart under strain  if you are eating a lot of sugar. I argue with my young boy here. He loves sugar. When he drinks tea he just puts in a lot of sugar. Me I [do] tell him. Perhaps the thing that is helping him is those [physical] exercises. (11F 40–49 Swahili) in Cooper, 2012  and health depend on our settlement situation, I think it’s clear that if you are not resettled well you cannot have social and mental health. al, 2008 )[depression] is not understood the way that it is looked at in such a specific manner in the Western culture and it is not that much experiencedy because if someone feels a little bit down there is always someone around. Severe forms of mental illness were described with terms such as ‘crazy’, ‘madness’ and ‘off-minded’ and associated with loss of control in this group as well as among the Eritrean group in Switzerland .“unless it’s the worst phase, that he’s going off-minded, is completely sick, like psychiatric symptoms,.. . small mental health related symptoms like stress, they are usually not considered as a sickness, so priority is given to the physical sickness” [It] is madness in which the person jumps around and shouts without reason. He sometimes throws his clothes and walks naked [ks naked The Somali refugee group in the United States observed that individuals with severe forms of mental illness were more harmful and violent compared to those with less severe mental illness . Some pa[In] the Somali context, [it] is someone who has totally lost it, violent, naked [and] should be on chains…  just by himself. And there is one who hit people, hurts people, they run around.”  is challenged … He comes out of his house and you can see on his face huge frustration caused by bickering and yelling happening at home … .Well, about how to overcome missing family, for example you come here, for example, I came here myself and my children are well fed but we do not havey my kids do not have a father, an auntie, for example their father is back home and they don’t know what could possibly happen to him.” Twenty-three studies conducted in nine countries  focused on experiences of seven conditions  , 54, 55.3.1.2.1 Physical disruptions. Physical disruptions emerged as a dominant impact of chronic conditions. Two main forms were identified: bodily disruptions .. . because of the spoilage of the nerve endings in your eye.... Your extremities may start feeling some sensation, losing a sensation because of your nerve endings getting affected by the sugar that you have. Sometimes may be in very extreme cases a person may develop sores or wounds that are due to diabetes (P1)  was really having its effect on me, I was really afraid that she [wife] would leave me’  … Life got very difficult for me, hope fading. If I went to another Somali, I know they would have stigmatized me. I went for counseling where the doctor lent me an ear and gave me advice. I wasn’t given any medication, rather he listened to me and gave me advice. I should have received the same from my community.” Two studies exploring mental illness perspectives and experiences among West, East and Central African asylum seekers in the US  and ‘Blain our country if you hear about somebody in this family sick, is mental, you lose trust in this person and whole family, maybe relative as well. And, […] they whisper about the whole family and maybe talk about grandmother, grandfather, and they lose respect”  University of Calgary. There is bread there for people who have diabetes.... She told me $6 for one bread…. When they told me it is expensive, I didn’t put in my mind to go there because of my house situation, financial situation. When you go somewhere, you need to know your pocket, what you have”  If I don’t check my sugar, I’ll be in danger.... So it’s just like something you don’t forget. It’s [medication] always in my bathroom... so I take it after I have brushed my teeth... it makes me weak so I take it only in the morning so that my body can be strong in the evening (laughing)” IDI- Male-09 in Nyaaba, 2019  too so now the children are not here, she cooks the way the doctor says.” al, 2019 )There are times when there is a party or gathering.... In my community or people from my country we get together a lot. It’s hard because you get together with people you know around food. You say ok it’s a gathering so I can eat more. You don’t get anybody discouraging you.... The women I know, the older women in our community, they have diabetes. Nobody is educating others. Saying hey, watch what you’re eating... so it makes it very hard when you’re gathering around the food to be able to manage your diabetes. ra, 2017 )Lifestyle changes. Participants in the same studies also reported engaging in broader lifestyle changes including taking up more physical activity and reducing alcohol consumption and smoking. Some participants incorporated lifestyle change into daily activities, such as getting off the bus a few stops early. Barriers to these changes included the psychological challenge of changing lifelong habits, time constraints (particularly due to pressures of work) and negative cultural attitudes .For instance, he usually does like this when he comes to the town centre by bus: he gets off at [X] and then walks the whole distance to the mosque and then walks back to [X] and gets the bus home. He tries to do some walking every day”. They see you riding a bicycle and think, “Oh why is this big person riding bicycle?”.. . you feel shy because we do not do that in Ghana… If you have the money, you can go and pay and exercise but we came look for money, so the work is too much no time.” Experiences in healthcare settings. Two studies reported factors that facilitated ideal care in healthcare settings in the UK and Australia. Factors included access to well-resourced mental health facilities which provided holistic mental health services, demonstration of care and love by mental health professionals, and easy access to community-based mental health support in the UK  is to go through bi-cultural community educators who have been trained. A larger number of studies, including the discussed, also highlighted barriers to ideal care in healthcare settings including: a lack of empathic care, biases in treatment, high cost of care, lack of access to healthcare professionals, language barriers and immigration problems. For a number of studies, these factors led to general sense of mistrust of health services.In one of the oldest studies reviewed, participants with sickle cell disease in the UK reported they experienced stigma from hospital staff, over-regulation of their medication regime by nurses and feelings of neglect .You do tend to find certain nurses who like to overstep their bounds, they feel they know the best regime for your painkillers…” “[The nurses] just seem to concentrate on the pethidine injections and that’s it. I’ve been in days without having any assistance with my hygiene and personal care, and changing of the sheets and helping me with fluids—just basic stuff like that.” In another UK study on sickle cell disease experiences conducted two decades later, a group of young people reported a lack of sympathy and condescending attitudes from health professionals .I sort of got ignored [in the ward] when I was calm and everything was fine, and I needed my tablets to be a constant, like every four hours. […] I’d be left for about eight hours, and then suddenly I’d get like a really bad sickle attack […] And I was even more stressed out because no one was listening, and I’d go for all these hours without like any tablets [pain relief]. And then the doctor would react after or during, whilst I was having a really bad sickle attack, or I’d be like crying, or in the bed like hunched over. And that was the only time that she would listen, but when I was calm and OK, or just sat there and go OK, I need my tablets, right, I need it now, I’ve been tracking the times, and they’d be like OK, and then not come back. […] She’d only see when I was in pain, and then she’d react, and then it was too late. […] It went on for about five days […] the second I say I’m not fine, for doctors they don’t seem to always react” Three studies conducted among former refugees from Sierra Leone and Sudan in Australia  and Afri“I know one person, he has struggled and struggled. He said what he could say but the limit of the words, the real words he wanted to say to the GP, he did not know the meaning of them in English. Then in the end they end up getting the wrong treatment” Inadequate consultation time at health facilities was a barrier to care for participants seeking mental healthcare in the UK , GhanaiaYou treat every- body with the same brush […] you go in and […] you are just like the next person. They do not take time to listen to you. And I do not think it is because of colour or anything like that. In talking to a lot of people, including White people, they encounter the same thing…” You know the doctors here; 10minutes…there is no time to ask questions... I speak the Dutch small, so it is small small... sometimes I don’t hear anything... oh, people talk, you know?.. .” IDI- Male-15 in Nyaaba, 2019  he thinks it is only crazy people going there” In one study on mental health in the UK, stigma consciousness informed decisions not to access mental health services. In another study on mental health in Somali communities in the US, stigma consciousness shaped the decision to seek medical care.“I once suffered from depression…. If I went to another Somali, I know they would have stigmatized me. I went for counseling where the doctor lent me an ear and gave me advice. I wasn’t given any medication, rather he listened to me and gave me advice. I should have received the same from my community.” The latter suggested a careful strategy of engagement in formal healthcare services that minimised the risk of disease stigma.3.1.3.2 Faith-based action. Six studies conducted in the US  is the one that is giving me direction, helping me out, it is not my power. It is God’s power. It’s God’s power that is helping me get through this diabetic. Thank God for that” If I get sick my Somali friends will visit me and pray for me,… Somalis we strongly believe that Quran is the best treatment and if you believe it, other modern medicine will work. It doesn’t matter whether it’s mental or regular hospital, we read Qur’an on the person. We have been told to do that. For example you take flowers. For us, we read Qur’an.” .. .” IDI- Female– 08 in Nyaaba, 2019 net…we hear about the medicines from the Ghana FMs... oh, you family member can buy and send to you if you send the money ba, 2019 )Somali refugee participants in the US reported that individuals with severe mental illness were managed with culturally-informed care practices at home–therapeutic sessions of ‘talking and listening’ by trusted family members . These iWe never let that person outside because, when he goes in public, he looks differently and other people will look at that person differently. And then person will get more crazy. We make sure always we keep him at home until he gets better. … We make sure that he gets everything and we keep them at home as long as we can and try our best.” quiet. And if that family has many kids, we move the kids, maybe [to] a cousin or relative, they don’t have any kids or maybe they have only one or two. … And we also take time to talk to him when he’s happy, when he’s angry, everything. We want to know about his mind. nn, 2015 )Three studies conducted in Switzerland , France The role of other people in the mental health of someone... has a great role, basically, especially in conditions like Eritrea, we are very connected. We have a connected culture […of]helping each other. It’s not like leaving someone alone or isolating them. So, this kind of living jointly together and harmonizing culture, it helps you a lot, basically. .3.1.3.4 Transnational therapy networks and ‘therapeutic journeys’. Omar et al (2017) used the concept ‘therapeutic journeys’ to describe how some Somali and Eritrean men sought solutions for the mental health problems from their home countries https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org. Please note that Supporting Information files do not need this step.While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool,  18 Oct 2022RESPONSES TO REVIEWERSReviewer #1: This review focuses on the lived experiences of chronic conditions among African communities in the Global North, focusing on established immigrant communities as well as recent immigrant, refugee, and asylum-seeking communities. We conducted a systematic and narrative synthesis of qualitative studies published from inception to 2022, following a search from nine databases - MEDLINE, EMBASE, PsycINFO, Web of Science, Social Science Citation Index, Academic Search Complete, CINAHL, SCOPUS and AMED. 39 articles reporting 32 qualitative studies were included in the synthesis. The studies were conducted in 10 countries  and focused on 748 participants from 27 African countries. The majority of participants believed chronic conditions to be lifelong, requiring complex interventions. Chronic illness impacted several domains of everyday life - physical, sexual, psycho-emotional, social, and economic. Participants managed their illness using biomedical management, traditional medical treatment and faith-based coping, in isolation or combination. In a number of studies, participants took ‘therapeutic journeys’ – which involved navigating illness action at home and abroad, with the support of transnational therapy networks. Multi-level barriers to healthcare were reported across the majority of studies.Overall, an interesting contribution. Response to general comment:We thank the reviewer for describing our review as an “interesting contribution” to the literature.MINOR COMMENTS:1. Please shorten the Introduction.Response to Comment 1: We have moved section on cognitive polyphasia and enculturation in the introduction  to the Aims section on page 2, just before we outline our research questions. This provides a clearer conceptual framework for the review questions. 2. Please provide a formal concluding paragraph.Response to Comment 2: We have restructured the final paragraph  to incorporate a formal concluding paragraph (page 38).Reviewer #2: The manuscript is well-written and scientifically-sound. The authors conducted a review to examine the lived experiences of chronic conditions among African communities in Europe and North America, and other countries in the Global North, focusing on established immigrant communities as well as recent immigrant, refugee andasylum seeking communities. We were interested in meanings, experiences and illness actionfrom the perspective of individuals living with chronic conditions. The study is novel and will add to literature.Response to general comment: We thank Reviewer 2 for describing our review as a ‘novel’ addition to the literature. 25 Oct 2022How chronic conditions are understood, experienced and managed within African communities in Europe, North America and Australia: a synthesis of qualitative studiesPONE-D-22-22810R1Dear Dr. Aikins,We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements.Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication.http://www.editorialmanager.com/pone/, click the 'Update My Information' link at the top of the page, and double check that your user information is up-to-date. 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For more information, please contact Kind regards,Donovan Anthony McGrowder, PhD., MA., MScAcademic EditorPLOS ONEAdditional Editor:Dear Dr. Aikins,The manuscript entitled “How chronic conditions are understood, experienced and managed within African communities in Europe, North America and Australia: a synthesis of qualitative studies” was revised in accordance with the reviewers’ comments and is provisionally accepted pending final checks for formatting and technical requirements.Regards,Dr. Donovan McGrowder (Academic Editor) 2 Nov 2022PONE-D-22-22810R1 How chronic conditions are understood, experienced and managed within African communities in Europe, North America and Australia: a synthesis of qualitative studies Dear Dr. de-Graft Aikins:I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! 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The traditional model of community club-based sport is fine for those, particularly children and youth, who enjoy the competitive focus and have the skills and commitment to play. But societal preferences during leisure time have changed dramatically over recent decades. However, sport organisations have made limited progress in response to these changes in providing ways in which children and youth can participate outside the traditional competitive structures and environments. In this paper the context of community club-based structures is reviewed leading into an assessment of the associated impact of these structures on sport participation. Children and youth's current motivations to play sport including what makes sport fun to play, are considered. It is then demonstrated that the associations between motivations to play sport and the factors that contribute to fun and enjoyment, are often misaligned for many individuals, with a primary focus on competition-based structures to deliver community club sport. In the final part of the paper a model for community sport organisations where people are put first is proposed - Sport4Me. Sport4Me is about flexible, inclusive, equitable sporting opportunities that focus on friends, fun, physical literacy and play. The model would complement the traditional competitive club-based model and afford participants more choice whilst fostering an environment that promotes lifelong involvement in sport. This model will require structural and cultural changes to the sporting environment and include coaching practices. Sport4Me is an evidence-based model, but it is not radical in its conceptualisation but rather, builds on previously proposed approaches, considers the needs and wants of potential sport participants and widens the scope of sport delivery. Community participation in sport in many countries including Australia, was established through local sports clubs providing competitive formats. With the purpose of competitive sport in mind, clubs developed structures that would seek sporting talent for elite teams and as such developed pathways for children and young people to develop and master the skills of the game. In this paper we focus on the Australian sporting context, but it is important to review how community club sport came into being around the world to better understand its systemic roots.Competitive club-based sport remains popular for children, however, significant drop-out during adolescence occurs, and few adults play . Half ofNot all sport is consumed through sport clubs . Whilst The context of participation in sport around the world is largely along two dominant dimensions – community participation and elite participation. It has been recently reported that the sport system in Europe essentially evolved on a platform of amateur participation and recreation-based sport . De JongAndrews and Silk 2018) explain the Anglo-Saxon model of sport delivery from the perspective of underlying neoliberal values. They note that neoliberalism as a structure of feeling has influenced the development of “corporate sport” – which is the commercialised and spectacularised domain of elite and professional sport (p. 512) . They fu explain As such in the Anglo-Saxon model, the commercial delivery mode of sport dominates and with this, a focus on developing elite (corporate) sport. In more recent times these quite extreme models started to mix and merge, and in Australia, which can be classified as an advanced sport economy, a refined mix of these two approaches to producing sport has evolved. It also needs to be noted that with the ever-increasing commercialisation of sport globally, the influence of the Anglo-Saxon “capitalist” model of sport is becoming significant. With Australia's “hybrid” model, it may well be that such increasing commercialisation is also impacting the ways in which club-based sport in Australia is perceived to be delivered.Community sport participation provided the foundation for well-established rules, regulations and traditions of a sport with the cycle of participation continuing from junior and youth participation to senior competitions and ultimately to elite and professional sport . In AustOne of the defining features of sport and elite sport in particular, is the desire to “win”, and this often leads to bias towards finding the highest skilled players , and to There are many sport models that have a focus on competition and elite development pathways and these have been recently explored and critiqued as they are not focused on community level sport . FurtherThe traditional Rijnland participation values of sport, the ways in which sport is delivered and in which formats, are challenged by changing lifestyles . Sport oAn example of such slow change is the move towards more gender inclusive sporting environments. In the last decade sport organisations in Australia, mainly driven by government incentives and start-up professional sport competitions for females, have started to open up clubs and competitions for females , 16. How•low participation rates in sport activities;•poor levels of skill development;•a limited range of available sports;•an adult orientation in many children's sports;•limited opportunities for girls to fully participate in many sports; and,•a lack of quality sport coaches. , 18.Two decades ago, a “Children in Sport Committee” was established by the Australian Sports Commission. The Committee undertook 18 months of intensive consultation with state and territory governments, teachers, sports coaches, the Australian Council of Health Physical Education and Recreation (ACHPER), and numerous National Sporting Organisations. The Committee identified the six issues of widespread concern:The Aussie Sport program 1985–1995) featured modified sports to encourage national sport organisations to develop age-appropriate sport forms for more accessible sport 85–1995 f “commandWith this common coaching approach enduring in community sport, concerns about the quality of coaching persist , 28, andIn order to drive participation in sport, we need to understand the key influencing factors. Many studies on determinants of physical activity and participation in sport have utilised a socio-ecological approach which looks at determinants across various domains including the intrapersonal, interpersonal, and organisational domains –33. ThesParents, in that regard, are often a driving force when it comes to children deciding in which sport to partake . For mosWhen moving into playing sport as an adolescent, perceived and actual belief in competence and ability to play the sport begins to influence participation motivation. Specifically, sport competence may underlie general self-esteem, in that a sense of self-worth or self-esteem is determined by specific competencies such as sport ability . EnterinVery few adults participate in club-based competitive sport . ParticiHowever, there remains an important place for competitive club-based sport. As such, in Australia a need to reconsider the pedagogy of sport coaching for engagement, enjoyment and performance has been recognised by national peak bodies for sport for some time , 22, 40.As participation in sport differs considerably across the lifespan, so do the motivations to play sport , 42. ChiMotivations to be physically active are important to understand and vary according to different types of activities and settings such as team-based activities compared to individual types of activities . OverwheSome gender differences include that males, more than females, are motivated to play sport to perform, compete and to be a professional athlete , 52–54. Females are more motivated by intrinsic factors, such as playing sport to improve physical and mental health, to lose weight, to be a good role model, and to learn a new skill . For girSince fun and enjoyment are often reported by participants irrespective of age as the main motivations to play sport across age and gender, we explore the meaning of fun and enjoyment further. Fun and enjoyment in that regard are also very important reasons to keep playing (retention) , 58. EimFor adolescents, the main factors contributing to having fun playing sport relate to “personal development” (such as trying your best), “social development” (playing well as a team) and “organisational factors” including “getting game time” and “well-organised practices” . For aduMen and boys were more likely to have fun when “winning” compared to women and girls who were more likely to report have fun playing when they had a “friendly coach”. Further, adolescent girls reported “trying your best” and “parents behaving well”, where boys reported “getting playing time” and “well-organised practices”  as reasoYounger players were more likely to report having fun when they were challenged, when their coach was friendly and when they were winning whereas older players had more fun when socialising and playing with friends as well as when they were keeping fit .Sport professionals, such as coaches, sport and recreational providers, and sport researchers, therefore, need to be careful when reciting “fun” as the motivator of sport participation because as explained, “fun” has various constituting components. Having “fun” is one of the main drivers that motivates people to play sport, but what “is” fun for one cohort is unlikely to be “fun” for another.Kahneman (2010) suggested that we choose to do things based on the memory of the experience and the anticipation of the new memory that will be created . If thatWe suggest, people drop out of sport because of the absence of agency and choice leading to a lack of satisfaction with the experience and a loss or absence of anticipation of a new memory being created, the lack of satisfaction, loss or absence of an anticipated memory creates a memory attached to the emotions associated with this experience that may lead to choosing to do something other than continue with sport. Sharot (2017) explained that emotion persuades behaviour, and in so doing, determines the moments that become remembered . CreatinIn For example, at the intrapersonal level, it is visualised that “fun” is at the heart of what motivates individuals to play sport, and that the main factor contributing to “fun” is “being challenged to improve”. It is shown that “having fun playing sport” is derived from having a sense of achievement and trying your best, and that the health and fitness motive is linked to fun by “keeping fit”. Finally, performance and competition as a motivator is linked to “fun” when respondents have indicated that “winning” is part of the fun for them.Along similar lines, at the interpersonal level the main motivation to be with friends is linked to having fun by “playing with friends”. Being motivated for social reasons is linked with the fun element of “socialising”. At this level playing sport is fun when they can “play well as a team” and when “parents behave themselves”.At the organisational level of the community sport club there are ways in which the (management of) the sport club can contribute to how playing sport can be fun. These ways were all related to coach behaviour and how coaches delivered the training and competition, including “getting game time”, “having well-organised practices” and “being friendly”. Overall, an inclusive and diverse club culture that includes volunteers, officials, parents, spectators, and players contributes significantly to higher levels of engagement and enjoyment in sport.Also highlighted at the organisational level are main elements of how sport is delivered. Community club-based sport is largely based on a competition model delivered through volunteer run community clubs with traditional formats of training and intra-club competition formats with a focus on winning and talent development.From here we have developed a Sport4Me conceptual model  which deParticipation in club-based sport remains largely based on the principles of competition and winning, ignoring wider societal changes that require a consumer driven approach to participation opportunities . As partIt is clear that the traditional model of club-based sporting competitions does not cater well for societal changes that include the broader inclusion of individuals within the community and a wider range of preferences and motivations to play sport, that cannot be delivered in the traditional competitive club sport settings.At the heart of our model sits “fun” and we have drawn on other research to further explain what “fun” means for participants of different age and gender. Overall, our main insight and as such, reconceptualization of how sport can be delivered, is to replace the focus of community sport structures on delivering competitions and “winners” of those competitions, to a wider perspective that positions the delivery of “fun sport” at the centre. This does not mean that club's or associations do away with competitions, but rather, from competitive (pathway driven) sport as the objective, to competitive sport as the principal means of delivering fun for all participants.A shift from extrinsic motivations and drivers such as winning, to intrinsic factors of fun and enjoyment has the potential to assist with not only participation and retention , 64 but In conclusion, the Sport4Me conceptual model has underlying principles that sports and/or community organisations can utilise in the development of participation, retention and re-engagement strategies and the implementation and delivery of a wider range of sport formats.