Morita therapy (MT) has been re-evaluated and has attracted much attention internationally to date. However, it is not known what kinds of experiences inpatients with mood disorders undergo during the process of recovery through MT. The purpose of this study was therefore to empirically clarify what subjective experiences influence the recovery from depression when it is treated with MT. Patients with mood disorders who were admitted to the Jikei University Center for Morita Therapy were included. Successive assessments of depression were performed using rating scales. Semi-structured interviews were conducted at the time of discharge regarding factors contributing to improvement, and were analyzed using qualitative data analysis methods to identify factors contributing to the recovery from depression among inpatients treated with MT. There were 24 subjects, 19 of whom completed treatment. The completers had significantly lower severity of depression severity upon discharge. Remarkably, qualitative analysis revealed that nine categories of experiences contributed to recovery from depression. In particular, experiences of “isolation bed-resting of MT”, “getting stuck in doing things one’s way”, “identifying maladaptive behavior patterns”, “modifying maladaptive behavior patterns”, “restoring self-evaluation”, and “change in negative emotions” were considered as the key experiences for recovery. Morita Therapy (MT) is an original psychotherapy developed by Japanese psychiatrist Shoma Morita in 1919 ,9,10,11.Although MT is a psychotherapy for neuroses such as anxiety disorders, obsessive–compulsive disorder, and hypochondriacal disorder, it has also been used to treat depressed patients since the time of Morita . He regaOutside of Japan, there are reports of pilot randomized controlled studies of outpatient MT for depression that show higher remission and treatment response rates in the combined MT group than in the usual treatment group . In addiThus, while we have seen some empirical studies and reports suggesting the efficacy of outpatient MT for depression, inpatient MT for depression has been discussed only in a few articles based on inferences drawn either from a small number of patients or based on the clinical experiences of the authors. Therefore, it has not been clarified what kind of changes actually occur with inpatient MT, what kinds of experiences lead to these changes, and how they lead to recovery.The purpose of this study was therefore to empirically clarify what kind of subjective experiences influence the recovery from depression in the recovery process of patients with mood disorders treated using inpatient MT.Patients admitted to the Jikei University Center for Morita Therapy between March 2010 and November 2017, including males and females aged between 20 and 65 years, were eligible for participation in the study. We conducted a single-center study in our university hospital because it was crucial for our qualitative study to maintain quality assurance concerning admission, treatment, and follow-up. The age of the subjects was set at 20 years or older, when growth and development were presumed to be complete, and no older than 65 years, because the subjects were considered to be more susceptible to organic changes after the age of 66 years. Patients were included if they fulfilled any of the following criteria of ICD-10 : mild orSubjects were diagnosed using ICD-10  at the tThe patients were interviewed on admission about their current medical history, medication, and past medical treatment.Using the Japanese version of the Hamilton Depression Rating Scale (HAM-D) , the autSemi-structured interviews were conducted within one week of the discharge date to confirm medication details and to identify factors contributing to improvement. The questions asked in the semi-structured interview consisted of the following: (1) When do you think your depressive state started to improve? (2) What changes did you notice that caused you to feel the improvement? (3) Were there any events that triggered the improvement? What was it like? (4) (While sharing the BDI-II and HAM-D graphs with the patients) Was there anything that happened at the inflection point (defined as the point where both scores showed significant improvement)? What did you experience around that time? (5) Besides (3) and (4), was there anything else that helped you to recover from depression? Tell us in more detail about the experience.The patients were asked to answer the above questions freely, and more questions were added as needed. The interviews were conducted by the authors, and were recorded on a voice recorder, and these recordings were converted into text data. In addition, the nursing logbooks and the daily diaries written by the patients over the course of their inpatient treatment were used to confirm the timing of their experiences.The data obtained via the above methods (subjective experiences leading to improvement) were analyzed using the qualitative data analysis method . First, This study was conducted to elucidate the factors that contribute to recovery from depression with inpatient MT, and it was considered useful to use a qualitative research method that can examine the subjects’ subjective experiences in detail, which cannot be adequately captured by existing quantitative research methods using questionnaires. In order to ensure the reliability and validity of this study, the analysis and examination of the data were carried out by three evaluators, namely, the first author; a clinical psychologist with experience in qualitative research (36 years of experience); and a psychiatrist .Inpatient MT consists of four stages, and the standard inpatient treatment nowadays takes approximately three months, compared to 40 days with the original Morita method. The following is an overview of the inpatient treatment at the Jikei University Center for Morita Therapy that the subjects underwent.Stage 1: Isolation bed-resting period In this stage, patients spend the entire day in bed except for eating, washing, and using the toilet. Therapists make brief rounds once a day. The aim during this period is to stop trying to eliminate symptoms and for the patients to face their own conditions.2.Stage 2: Light occupational work period During this period, patients perform light tasks that can be done on their own. In practice, the activities include visits and observations inside and outside of the wards, woodcarving and pottery making. The aim is to encourage spontaneous activity and to develop an attitude of not being carried away by moods and of engaging in what is in front of them. They also start to participate in consultation sessions with therapists (2–3 times a week) and diary guidance during this period. They are asked to write down what they did that day and their living conditions in their diaries, on which the therapists provide comments.3.Stage 3: Intensive occupational work period In this stage, patients cooperate with other patients to carry out various basic daily tasks, such as cleaning the ward and taking care of plants and animals. Since it is important that they work spontaneously in occupational therapy, patients decide which tasks they engage in. Later in this period, they take on a responsible role in the overall work of the ward. Thus, the aim is to cultivate an attitude facilitating flexible actions, regardless of symptoms, through the practice of daily living4.Stage 4: Preparation for daily living period This is the stage for patients to think concretely about their life after discharge and to prepare to return home. This may include overnight stays at home and, if necessary, commuting from the ward to work or school, just as in a night hospital.The present study was conducted with the approval of the Ethics Committee of the Jikei University School of Medicine for Biomedical Research (Document number: 21-181:6059). Eligible participants were introduced to the aim, procedures, perspectives and the possible discomforts or benefits associated with the study. They signed a standard informed consent form describing their rights to withdraw at any time during the study without this having any consequences for their treatment in general.t-test was used for comparisons between completers and discontinuers for HAM-D and BDI-II scores. The BDI-II scores measured over time were analyzed using repeated analysis of variance (ANOVA), with a significance level of 5% two-sided, and Bonferroni correction was used to adjust for the multiplicity of tests. Corresponding t-tests were used to analyze HAM-D scores and the mean antidepressant dose  at admission and at discharge. Changes over time were illustrated using box-and-whisker plots. The datasets analyzed during the current study are available from the corresponding author upon reasonable request.The background of the subjects was indicated by the frequency of the category for nominal variables, and the mean ± standard deviation (SD) was calculated for continuous variables. Student’s two-sided From March 2010 to November 2017, 24 patients (11 women and 13 men) were included in the study, with a mean age of 42.21 ± 9.76 (SD) years. The participants’ diagnoses included two cases of a depressive episode, 13 cases of recurrent depressive disorder, and nine cases of bipolar–affective disorder , and all subjects met the criteria for a mild or moderate depressive episode. Details are shown in The progression of the BDI-II scores on admission, at the end of the isolation bed-resting period, at the end of the light work period, at the end of the intensive work period, and at discharge from hospital in the completers, is shown in Data (subjective experiences leading to improvement) from the discharge interviews of the completers were analyzed using the qualitative data analysis method . First, The specific coding process is shown below using Case 7 and Case 17 , I thought about how I could work and came up with the ideas that I could leave the role of plant leader to others and work on the tasks that I might be able to do no matter how bad my depressive feelings were. As I engaged quietly in the work, I gradually forgot about my depressed mood {mood changes while engaging in tasks in front of me}. To this day, I could not show the incapable part of myself {realizing one’s own tendency}. I had a sense that being perfect was the bottom line {realizing one’s own tendency}. I realized that as I thought I was trying to help everyone become intimate and was taking a role to manage the situation smartly in front of everyone, I became the odd one out without noticing {realizing one’s own tendency}. As we were working as a team, it was a good experience for me that I had to work as everyone else does according to the same schedule so that I could not do “not today” {dividing activity by time}. The experience of being a coleader within a time limit was good. Although I felt, “I should and want to do this and that too”, I realized that there was a limit to time as well as my stamina, and it was a good experience for me to manage within the time limit {modifying one’s own tendency}.Case 7 ⮚<Experience of Bed-Resting>I felt rested in bed-resting {rest}. During the day, I thought about the past and regretted it {thinking about the past}, {regret about the past}, and I had a hard time worrying about life after discharge and the future {anxiety about life after discharge}. I had always been anxious about the future {vague anxiety about the future}. In the end, I thought that no matter how much I thought about it, it wouldn’t change my anxiety {thinking it through to find that there was no answer}. Taking a bath on the seventh day of bed-resting felt very good {bathing was pleasant}. Observing the work with pigeons was very interesting {becoming interested in the work}. I could concentrate on wood carving {concentrated on wood carving}.<Experiences after the bed-resting stage>About a month and a half into the work period, I became able to do a certain amount of work, and I started to think that I could do so many things, whereas before I thought I was useless because I couldn’t do anything {feeling that I was not useless}, {I felt confident as I could do things}. I was overdoing any kind of work, thinking “I have to do it perfectly” {realizing one’s own tendency}. Since I wanted to do things the way I wanted and feared that if I relied on others, they would think of me as incapable, I always tried to do many tasks on my own and became tired {getting tired doing many tasks alone}. Listening to the advices from the doctor, I gradually started to consult with others and actually relied on others, and I felt relieved and thought that it was alright {modifying one’s own tendency}. I usually overdo things, but here, when it’s time for a break, I can’t do the work {dividing activity by time}, which I didn’t like at first, but gradually, I became able to rest like everyone else {modifying one’s own tendency}. I was frustrated when things didn’t go my way {frustrated when things didn’t go my way}. At such times, I noticed that my emotions changed as I engaged in the work {mood changes while engaging in tasks in front of me}. Working collaboratively with others for the tasks such as taking care of plants, I realized that even if I didn’t like the work at first, I could feel that it was more or less rewarding as I continued to do it. Although being a co-leader was something I hated the most, as I undertook the role, I found that there were things that I could not have done if I was not a co-leader, and I enjoyed it {becoming motivated after getting on with tasks}. I thought I would miss something valuable if I judge without even trying {modifying one’s own tendency}.Case 17 The group of patients whose BDI-II scores improved after bed-resting (16 cases) was compared with the group whose BDI-II scores showed no improvement after bed-resting (3 cases) .The non-improved bed-resting group showed lower percentages in “experience of thinking it through”, “increased desire for activity”, “sense of accomplishment”, and “restoration of healthy sensations”. In the post bed-rest experiences, the non-improved group showed a higher proportion of “identifying maladaptive behavior patterns”, “modifying maladaptive behavior patterns”, and “change in negative emotions”.After bed-resting, two major patterns were found in the progression of BDI-II scores: the group whose BDI-II scores continued to decline (6 cases), and the group whose scores continued to decline while going up and down (13 cases). So, the group whose BDI-II scores continued to decrease after bed-resting was labelled as the decreased group, and the group whose scores lowered while going up and down was labelled as the fluctuating group. These two groups were then compared .The fluctuating group displayed a higher proportion of “experience of getting stuck doing things one’s own way”, “modifying maladaptive behavior patterns”, and a lower proportion of “keeping regular hours”.In this study, the BDI-II and HAM-D scores on admission and at discharge were compared in the 19 inpatients with mood disorders who completed MT, and both showed a significant decrease at discharge. However, we could not prove that inpatient MT was effective in improving depression in inpatients with mood disorders because there was no control group, and, the subjects requested inpatient MT on their own, meaning convenience sampling was employed in this study. In addition, various confounding factors, including the Hawthorne effect, were present and could not be adjusted for.A comparison of BDI-II scores on admission and at the end of bed-resting in the 19 patients who completed the treatment showed a significant decrease in total scores after bed-resting. Of the 19 completers, 3 displayed worsened scores as a result of bed-rest. However, their BDI-II scores at discharge were lower than on admission. Therefore, a worsening BDI-II score after bed-resting could not be considered as an indicator of outcome at discharge.Originally, Morita regarded the significance of bed-resting during inpatient MT as being useful for differential diagnosis, for rest of the body and mind, and for facing anxiety and distress—the experience of immediate release from anguish . In otheAmong the experiences that contributed to recovery, the experiences that triggered improvement, and the experiences at the inflection point when BDI-II and HAM-D scores improved significantly, were the following six common experiences: “isolation bed-resting of MT”, “getting stuck doing things one’s own way”, “identifying maladaptive behavior patterns”, “modifying maladaptive behavior patterns”, “restoring self-evaluation”, and “change in negative emotions”. These results suggest that these six experiences are important factors in the recovery of patients with mood disorders during inpatient MT.In general, patients with typical anxiety disorders follow the process as below during inpatient MT . In the Based on the results of this study, subjective experiences that lead to improvement in depressed patients during inpatient MT were categorized using qualitative data analysis methods . The samThe experience of “isolation bed-resting of MT” helped patients to rest their body and mind, and moreover, increased their desire for activity, which was considered to give impetus to the treatment from the light work period onwards. The experience of “being encouraged by other patients’ attitudes” was often described as an experience in the early stage of inpatient treatment; and the presence of peers who were trying to cure their illnesses together during hospitalization encouraged the patients, enhanced their motivation for treatment, and facilitated their behavioral change. In addition, “keeping regular hours” was also experienced in the earlier part of hospitalization, and supported behavioral change. While many patients were prone to think “I don’t feel well, so I will take a break”, they started to think, “I don’t feel well, but it’s time for work, so I have no choice but go out to work”. Thus, the patients showed a behavioral change with inpatient MT, which is similar to the behavioral activation (BA)  proposedA “change in negative emotions” was often experienced in the middle stage of hospitalization. It was often obtained by means of the work they engaged in while dealing with unpleasant emotions. This can be an experience involving restoring the fluidity of the mind, as the mind that has been stuck in a vicious cycle of depression  moves alIn the improved bed-resting group, the patients rested their physical and mental state, regained a healthy sense of their bodies, directed their interest toward the outside world, acknowledged fresh perceptions, and had a heightened desire for activity. Many of them also had experiences of “thinking it through” and they reported that they had reached a state of mind departing from the ruminations associated with depressive thoughts. Thus, for the improved bed-resting group, it is considered that bed-resting is not just a simple break, but rather it is useful in improving the physical dimension of recovery as well. On the other hand, the non-improved bed-resting group had lower percentages of “thinking it through”, “increased desire for activity” and “restoration of healthy sensation”. As for the experiences after bed-resting, all patients in the non-improved bed-resting group reported the experience of a “change in negative emotions”, “identifying maladaptive behavior patterns” and “modifying maladaptive behavior patterns”. Based on these findings, depressed patients who cannot change their negative emotions through rest alone might need to experience changes in negative emotions through work (or activity) to recover from depression.The fluctuating group had higher percentages of “experiences of getting stuck doing things one’s way” and “experiences of modifying maladaptive behavior patterns”, and lower percentages of “keeping regular hours”. This might mean that, for depressed patients whose depressive symptoms do not improve simply by adjusting their daily lives, “experience of getting stuck doing one’s way” is important for recovery. In the fluctuating group, BDI-II scores worsened each time they experienced “getting stuck doing things one’s way”, but each time this happened, it was considered to have led to the experience of “modifying maladaptive behavior patterns”. Thus, it might be important to experience “getting stuck doing things one’s way” in order to modify one’s maladaptive behavior patterns.Based on clinical observations of 899 patients with manic–depressive psychoses, Kraepelin stated that “usually a single illness would last six to eight months . NormallThe nonspecific recovery mechanism is a common mechanism regardless of the case, and is activated not only by psychological triggers but also by physiological and physical triggers. Janet suggested that the treatment of depression should begin with the application of the method of psychological power-saving and rest, and that, from this rest, an upsurge can occur . Thus, tInpatient MT is based on nonspecific recovery mechanisms, and in the process of recovery, specific recovery mechanisms are thought to be synergized in terms of modifying psychological factors (“the way things should be”) that impede recovery .Among the categories of experiences that contributed to recovery from depression identified in this study, rest of the body and mind in “bed-resting experience”, “keeping regular hours”, “self-reflection in a diary”, and “being encouraged by other patients’ attitudes” were considered nonspecific recovery mechanisms, while experiences of “bed-resting” other than rest of the body and mind, “getting stuck doing things one’s own way”, “identifying maladaptive behavior patterns”, “modifying maladaptive behavior patterns”, “restoring self-evaluation”, and “change in negative emotions” were considered to be specific recovery mechanisms with inpatient MT .During inpatient MT, patients undergo a variety of experiences, and nurses play an important role in sharing life and work situations with patients. In general, the role of the nurse in inpatient MT is considered to mainly involve “watching over” and “intervention”. In other words, it is important for nurses to watch over and encourage patients in a receptive manner, rather than directly reaching out to them, and to be involved in their lives from the same perspective, understanding their struggles and strengths, which can easily lead to progress in treatment. In addition, according to Nakaema et al. , the “nuFive limitations of this study were identified.A total of 414 patients received inpatient MT during the period of data collection, of whom 90 had a diagnosis of a mood disorder. However, the number of subjects was reduced to 24 as they were selected strictly to only include patients aged 20 to 65 years and excluding those with other psychiatric and behavioral disorders, such as anxiety disorders, personality disorders, and developmental disorders, as well as those who were readmitted to the hospital. The sample size of this study was small, and it needs to be expanded upon in the future.In general, patients with mood disorders who are candidates for inpatient MT have already received general treatment, including rest and medication, which may have alleviated their acute depression to some extent, but many of them are in a prolonged state of mild depression . In factThe subjects of this study were patients who visited a university hospital in Tokyo, Japan, and voluntarily requested MT. The investigation was conducted at only one institution and may have different characteristics from studies conducted at non-university hospitals.Only those who completed the treatment could be interviewed at the time of discharge, and not those who discontinued treatment.Regarding pharmacotherapy, no significant difference in the use of antidepressants was found before and after hospitalization. However, other medications such as mood stabilizers and anxiolytics were also used at times, the effects of which could not be investigated.In this study, nine categories of experiences that contributed to recovery from depression were identified among those who completed inpatient MT: “isolation bed-resting of MT”, “getting stuck doing things one’s way”, “identifying maladaptive behavior patterns”, “modifying maladaptive behavior patterns”, “restoring self-evaluation”, “change in negative emotions”, “keeping regular hours”, “self-reflection in a diary”, and “being encouraged by other patients’ attitudes”. In particular, of these nine categories, the first six experiences were considered as the key experiences for recovery.Furthermore, the recovery process of patients with mood disorders during inpatient MT showed that there were two patterns: one group showed steady improvement, and the other group showed improvement after repeated deterioration and improvement. In addition, experiences of “bed-resting” other than rest of the body and mind, “getting stuck doing things one’s way”, “identifying maladaptive behavior patterns”, “modifying maladaptive behavior patterns”, “restoring self-evaluation”, and “change in negative emotions” were considered as the recovery mechanisms specific to inpatient MT.


Individuals were asked to play an active role in infection control in the COVID-19 pandemic. Yet while government messages emphasised taking responsibility for the public good , they appeared to overlook social, economic and political factors affecting the ways that people were able to respond.We co-produced participatory qualitative research with members of Gypsy and Traveller communities in England between October 2021 and February 2022 to explore how they had responded to COVID-19, its containment  and the contextual factors affecting COVID-19 risks and responses within the communities.Gypsies and Travellers reported experiencing poor treatment from health services, police harassment, surveillance, and constrained living conditions. For these communities, claiming the right to health in an emergency required them to rely on community networks and resources.They organised collective actions to contain COVID-19 in the face of this ongoing marginalisation, such as using free government COVID-19 tests to support self-designed protective measures including community-facilitated testing and community-led contact tracing. This helped keep families and others safe while minimising engagement with formal institutions.In future emergencies, communities must be given better material, political and technical support to help them to design and implement effective community-led solutions, particularly where government institutions are untrusted or untrustworthy. •Co-produced qualitative research with Gypsy and Traveller communities in England.•Gypsies and Travellers organised collective actions to contain COVID-19.•Community-led solutions included community-facilitated testing and contact tracing.•Community responses developed in the face of marginalisation and discrimination. Ignoring these social factors has hindered programmes both in the past, and during the COVID-19 pandemic . In thisIndividuals were urged to play an active role in COVID-19 infection control. In the UK, government rhetoric emphasised personal sacrifice and responsibility for the public good , largelyGypsy, Roma and Traveller communities  are parWide-ranging and intersecting inequalities and challenges faced by Gypsy and Traveller communities in Britain  include : high leWe conducted this study in England, where the challenges Gypsy and Traveller communities experience were being exacerbated by the Police, Crime, Sentencing and Courts Act 2022, which was passing into legislation while this research was being conducted. The Act makes residing in a vehicle on private or public land without authorisation a criminal offence  and carrIt was in this challenging context that Gypsy and Traveller communities experienced the COVID-19 pandemic, and were asked to test, trace contacts, and self-isolate to help reduce the impact of the virus.2The UK government developed a centralised COVID-19 test and trace mechanism and provided two testing methods: Real-time reverse transcription polymerase chain reaction (PCR) and rapid antigen lateral flow device (LFD) tests. Both tests were free of charge at point of use. LFDs did not require swabs to be taken to laboratories and could produce quick results at home. Rapid access to test results was important for timely self-isolation and speedy reporting - crucial for effective contact tracing and reducing onward infection . InfectiCOVID-19 testing could be seen as part of wider bio-political mechanisms through which governments introduce instruments and codes of practices to govern people's everyday life, making the individual responsible for reducing infection . In the The focus on individual responsibility for virus containment, however, risks ignoring the social and structural dimensions of people's lives and presupposes that individuals are free to behave in particular ways and be able to engage with public health systems . For insThe costs to individuals engaging in testing should also be considered, such as self-isolation on positive test, time invested in frequent testing, and loss of income while self-isolating .3We were commissioned in 2021 by the UK Department of Health and Social Care (DHSC) via the National Institute for Health Research (NIHR) Policy Research Programme to conduct this work, to provide urgent information to inform policy. The project “Routes: New ways to talk about COVID-19 for better health” used a participatory qualitative approach. The overarching project was co-produced with members of Gypsy, Roma, and Traveller communities (GRT) and migrant workers in precarious jobs in England, and to some extent with DHSC officials (interviews included questions addressing policy priorities). Involvement of communities is crucial to co-produce inclusive solutions for emergency preparedness and response that are accepted by communities and work well to meet their health security needs . We co-pInterviews were conducted by three team members with relevant backgrounds . RS is an academic researcher from a Traveller background; SF is a co-researcher from a Romany Gypsy Showperson background; CK has worked extensively with Roma communities.Collaborating and developing dialogue with communities throughout the project was crucial to ensure the knowledge generated via the research incorporated their voices and expertise. Members of marginalised communities are better placed to produce knowledge about their own experiences and realities than outsiders and bring this expertise into the research process , 2000. TAs well as the informal conversations, dialogues and other participatory work, we conducted in-depth interviews with 47 individuals from GRT communities, of whom 30 were members of Gypsy and Traveller communities (the focus of this paper), between October 2021 and February 2022.We aimed for diversity in our sample in terms of age and gender, type of living arrangements  and identity . We conducted interviews in areas within four broad geographical locations in England . Many participants self-identified into overlapping categories (e.g. Gypsy Traveller), highlighting the plural and fluid nature of identities within these communities .Interview topics and questions were informed by discussions with community members. In the interviews we explored participants' experiences of the COVID-19 pandemic in the context of their lives and of COVID-19 public health responses . We adopted a holistic approach and included questions to understand the broader context of participants’ lives beyond COVID-19, including living environment, relationships with healthcare and other services more generally and, crucially, issues identified as important by communities that affect how they engage with public health interventions.In this paper, we present findings from the interviews with Gypsies and Travellers, which were distinct from those of the Roma communities. We draw on data from qualitative in-depth interviews with 23 women and seven men from Gypsy and Traveller communities . In some cases, members of the research team and co-researchers used their existing contacts within communities to secure interviews. In locations where we were ‘outsiders’, we worked with trusted networks to enter these communities. We conducted nearly all our interviews in person in community sites (e.g. homes) and in some cases there was more than one participant in the interview, responding to participants' cultural practices.Participants gave signed informed consent. Consent information was communicated verbally when necessary. We gave interviewees £40 to compensate for their time and travel costs, and provided referral information to health and support services. We audio recorded interviews, which were then transcribed verbatim by a transcription agency. We paid co-researchers a set rate based on NIHR guidelines and agreed in advance .The study was approved by the London School of Hygiene & Tropical Medicine Research Ethics Committee (No. 26440).a priori to explore the thematic areas of interest of the test and trace journey and the wider public health response . Other codes and themes emerged inductively from the interview data. During the analysis we also drew on fieldnotes taken after interviews, on team analytical memos, and on team analytical discussion meetings. Through these analytical meetings we contextualised and refined the analysis, informed throughout by RS's lived experience of being from a Traveller background. As part of the participatory approach, we also discussed the findings with two people from Gypsy and Traveller communities (SF and another person) to enrich the analytical process.The analysis followed some of the principles and practical steps of Charmaz’ constructionist grounded theory , using iterative methods of constant comparison that are particularly useful for exploring lived experience , 2006. TInterviews are numbered. These numbers were allocated within the wider study from which the Gypsy Traveller interviews are drawn .4Participants organised and led collective actions to protect their own and others’ health, and to navigate constraints of the public health response to the pandemic. They used free-of-charge COVID-19 public health services and resources  in tandem with their own protective measures such as community-led contact tracing, which evolved as mechanisms to keep their families and others safe and to support community needs during the pandemic. These protective measures were not without challenges, and were developed in the face of chronic and ongoing marginalisation, exclusion from health services, police harassment, surveillance, discrimination and constrained living conditions.4.14.1.1Participants told us about different experiences of police harassment and surveillance by local authorities and neighbours, including policing during lockdowns (Quote 1). Some participants for instance lived in council-run traveller sites surrounded by CCTV cameras pointing at their homes/trailers; some sites were locked with council-installed barriers and padlocks, which residents could not open.“I’ve got a £400 Coronavirus fine from the courts, because when he got arrested […] they’ve [police] rung me up, and said, can you be his appropriate adult? […] And then they’ve ended up pulling me over [the police], they put the handcuffs on me, searched my car, and then give me a fine for, for breaching Coronavirus regulations.”One man said he was harassed by the police and fined for breaching COVID-19 lockdown regulations while on his way to the police station, at police request:Quote 1 (Interview 6)[…] my son laid there, and there was police officers round my son, and they kept, they kept saying to us, “you’ve got to leave the room now, you’ve got to leave the room” […] And um, I said to them, you know, “why, why have we got to leave the room? He’s laying here, you know, we just want to sit with him.” […] He [hospital staff] said, “you should allow her”, he said, “you sit there with your son”. And he, and one of the police officers, he actually said, “well no, I’ll sit with you.”One woman told us that her son's death, prior to the pandemic, had not been adequately investigated by the police (Quote 2). In addition, when her husband had arrived at the hospital to see their son, he was arrested. The police also searched another family member's car. The woman told us how she tried to spend time with her son's body in the hospital, but the room was heavily policed, and her requests were disregarded – an example of the lack of cultural awareness by the police: sitting with the deceased is an important part of the grieving process for Travellers.Quote 2 (Interview 43)The experience of this family resonates with pre-COVID-19 experiences of author RS's family: on two separate occasions when family members died, other members of the family were arrested. This included the raiding of the homes of several family members within hours of a teenage boy being killed in a car crash.to make out it was a gathering”. The council sent her a letter saying she had breached her contract with this “antisocial behaviour”. One woman said her neighbours had installed cameras overlooking her house. She described intense surveillance by social services and other authorities, and attempts to evict her, as a result of calls and racist assumptions made by her neighbours. She told us about her neighbours characterising her family as dirty and infectious, that they assumed she sold drugs and that she was being “stalked” by them.Two participants also told us they had experienced hostile surveillance by neighbours who reported them to the police. One woman told us that during the pandemic a non-traveller neighbour had reported her to the police. The neighbour had taken a photo of her chatting to someone while buying an ice-cream from an ice-cream van, and sent it to the police, trying “4.1.2didn't really want to come in”. Many participants were carers for the elderly, for newborns, or for children with special developmental support needs.The government push for citizens to engage with public health responses to COVID-19, including vaccination , contrasbig push about postnatal depression”. She told us about an encounter with a healthcare professional who patronised and lectured her about what not to feed her baby, based on preconceptions about Gypsy women's weaning practices. She felt “scrutinised and judged” and was not given space to talk about her concerns (Quote 3):“I’ve got a kid that’s like, you know, six months behind her percentile […]. But nobody, the only message I ever had, […] It was like a, one of the first reviews they did, and it was a very long lecture about not feeding her mashed potato at three month old. I think somebody’s told this woman that Gypsies feed their babies mashed potato […] she knew I was a Gypsy woman. And she just kept saying it. I was like, I will wean her when she’s ready, when, I’ve read the books […] And I plan on weaning her on vegetables that are not sweet […]. But she just kept going on about this mashed potato […] it’s like, excuse me, but I think you’ve got some very racist views.”One woman whose baby was a few months old when the pandemic started told us she had struggled to get access to healthcare for the baby (e.g. GP appointments and check-ups). She felt isolated and lonely; health visitors never contacted her, and she contrasted this neglect with the “Quote 3 (Interview 45)“It's much easier just to disregard us, put us off. Give us ridiculous appointments and ridiculous conditions to those appointments, that you can’t keep. And the, the thing that really annoyed me is, if I hadn’t have rang back [the GP] and said, I can’t get a, a PCR test [that the GP requested for her daughter’s appointment], it would have been put down as though I’d missed an appointment."The same woman's baby had a routine 12-month checkup by phone. She said she worried that if something was wrong she would be blamed for neglect and this particularly worried her because of a “spike” in Traveller children being taken into care. She talked about discriminatory treatment against Travellers in health services (Quote 4):Quote 4 (Interview 45)spoken to like an idiot” by a doctor when asking whether the vaccine caused infertility. She said that the doctor did not address her concern and instead explained to her how women conceive.Interviewees also described their concerns about vaccination being disregarded. One woman who acted as representative of the Gypsy and Traveller community at a health forum told us about being patronised and “4.1.3We had to have a gate codes broke off, because they refused to give us the code.” She wanted to move off the site because the council treat them like “animals”. A participant said they were not allowed to have the gate codes because “they don't trust us”. One woman was worried about not getting urgent care on time during the pandemic because years ago someone at the site died waiting to be attended by the ambulance. Instead the police came as if someone had “committed a murder”. The police thought the person had died (in a moment of panic the family had screamed he was dead) and held the ambulance off for 30 min. Others talked about ambulances and food delivery vans not wanting to come to the sites. One woman, very ill with COVID-19, had had to call an ambulance two or three times. She explained that the ambulance “didn't really want to come in” but “they had no other choice”.Certain characteristics of participants' living conditions  made health risks and marginalisation particularly visible to the communities forced to endure them. A participant spoke of her experience breaking the lock on the council site entrance for the ambulance to get her husband who was very unwell with COVID-19: “being told” to adhere to UK government hand-washing guidelines. Yet to adhere to such practice she had to resort to her own resources (buying antiseptic solution) and engage in a more demanding sanitising regime. Her disciplined hand-washing regime took a toll on the children's skin:We were being told now to wash our hands, like, continuously during the day, that they, the safe thing to do was keep washing your hands. We didn’t have the water to do it […] the council refused us water […] with the handwashing, there were dishes of water, like I was going crazy because I had a bucket at the door with Dettol [concentrated antiseptic solution]. […] What I used to do is I’d keep a bucket of water at the door and pour a three cupful of Dettol in it and leave a towel on the bench beside, bench outside the caravan door […] and what I used to do was, and even when the kids were going out, dip your hands in the bucket, wipe, any time they were going back in, dip your hands in the bucket, wipe. They had no skin left, I had to go and buy hand cream in the end where it was going on and on for weeks and weeks. […]Other infrastructure problems on sites also made it harder to keep safe and protect health during the pandemic, including overcrowded living conditions, problems getting post to sites with no postcode  and council neglect: some had no access to water and electricity during lockdown. One woman with children living in a private site where a lot of vulnerable people lived told us about her efforts to follow official COVID-19 guidelines for handwashing after the local council had disconnected the water supply during a dispute about planning permission (Quote 5). Faced with the obstacle of not having access to running water, she had to devise her own intricate hygiene regime to disinfect her children's hands. She recalled “Quote 5 (Interview 35)4.2Communities engaged with COVID-19 containment measures and organised collective action to keep their immediate and extended family circles safe and to avoid spreading the virus. They did this in the face of constrained living conditions and experiences of discrimination illustrated above. Free COVID-19 tests were widely used, with positive test results reported into personal networks to notify contacts and help stop the spread, and self-isolation was taken seriously. These protective measures were used in tandem with self-led and community organising solutions, which involved communities mobilising to provide mutual assistance, including; (1) helping with testing and contact tracing to keep families safe and avoid spreading the virus, and (2) helping with basic needs during self-isolation and lockdowns.4.2.1When you’ve done the [PCR] test and then you're waiting on the day or something, you think to yourself, oh God. Like what if I have got it, what if I haven't got it. So what if I need to do something and then I have got it and then I'm going around spreading it to someone, do you know what I mean? […] So it gives you that little bit of a thing where you got the, the results quicker and you haven't got the worry of …Testing was facilitated by tests being available free of charge. Participants engaged in testing for predictable reasons such as having COVID-19 symptoms, compulsory testing for school/work/hospital visits or being a contact of a positive case. Testing and self-isolation were underpinned by desire to keep families safe and avoid spreading COVID-19 to the wider community. For example, a woman who was a key worker during lockdown was constantly worried about being infected and bringing the virus home to her parents (Quote 6). She tested at least once per week and chose rapid tests as soon as she heard about them, even though the test centre was further away. Having access to rapid tests meant she did not have to worry about the possibility of spreading COVID-19 to others while she was waiting for the results.Quote 6 (Interview 44)massively over-test” because she did not have symptoms but tested for “security” if she had been in contact with a positive case. She said testing was “never about me, it was always about people around me”. She also talked about how community-led assistance to support testing of site residents developed in response to lack of official support. No officials or healthcare professionals had come to her site to give information about how to access tests (Quote 7). One of the younger residents at the site worked out how to book appointments for PCR tests and explained the process to the residents, supporting them with the bookings and explaining what to expect would happen at the testing centre.[…] we didn’t have a liaison officer to come down and say, well, that’s what you need to do [for booking a test], that’s where you need to go. But once, once one of the younger girls that was there found the process of how to do it and kind of showed us all one by one of, well, you go on that app, and you do that, and then you go to there, and then you do it through the bag, and you give it out through the car window back to the people and things.A similar sense of responsibility towards others was shared by a woman who explained she did not “Quote 7 (Interview 35): “[they] didn't come to us, so what, we were OK to die then were we, OK, to get it and die?”This participant also told us about residents at her site being forgotten by the council: site residents had not been informed of an outbreak in a nearby town and that they needed to get tested. Everyone in town had been asked to get tested at a particular centreI know, you, you’re not supposed to, are you? [obtain LFD test for others] Because I think when they send them out like you can only use like one email address, but I’ve got like four or five email addresses. And some people up here, they’re like, I can’t, it won’t let me order them or I can’t figure it out. So, I just order it in their name, but with my email addresses. So that other people up here can get them as well […] Or I’ve given like boxes of them to people before.Early in the pandemic some participants had found it difficult to access tests, for instance, finding it hard to book tests. Some did not know how and where to access tests and would have welcomed more information. Access to PCR and LFD tests was facilitated by the community: community and family members collected and distributed LFDs, and helped others with booking tests and accessing testing centres. During our engagement with communities as part of our participatory work we were told one organisation had produced videos with instructions about testing for members of GRT communities and circulated these via their networks. One woman told us about working out a way to navigate limits of the test ordering system to procure tests for others in the community:Quote 8 (Interview 20)it's all fake” but had taken her son for a COVID-19 test after he was exposed to a positive case at school. She talked about COVID vaccination as a government tool to monitor people. She also said that she did not test because she was constantly under stress from her neighbours: their constant surveillance, accusations, and racism.One participant, who lived in a house rather than on a Traveller site, told us she had never been tested for COVID-19 because "4.2.2All participants who had been infected said they had self-isolated and often described making a great deal of effort to avoid infecting others. For example, one participant told us she wore a mask at home to protect her partner and children and carried out repeat LFD testing during and at the end of the isolation period to double check they were all negative before they went out. The family waited a further four days before visiting vulnerable relatives. Another woman had symptoms so booked a PCR test (which was positive) via drive-through to avoid infecting others.“I had four at one time, all tested positive for Covid, so they were all shut in that room there. […] And literally, the room’s no bigger than you could swing a cat in”.For some, self-isolation was very difficult to achieve because of crowded living conditions, lack of financial support, or lack of childcare. It involved personal and financial sacrifices. One woman living in a caravan with one bedroom with very little space to self-isolate, said three of her children and her partner had had to self-isolate in one room (Quote 9). She also spoke about the financial costs of having to take time off from work for repeated periods of self-isolation when members of her family became ill, either simultaneously or consecutively.Quote 9 (Interview 27)Participants universally told us that they would report any positive COVID-19 test result directly to contacts through their personal and social networks. There was no evidence of stigma associated with being infected: participants wanted to tell others to protect them and help stop the spread. There was a shared sense of responsibility towards others and to avoid being a risk to others.one big family” and “everyone helps each other out”. Other participants shared similar examples of mutual aid at their sites and in their personal networks to provide food and other necessities during lockdown or self-isolation.I mean, up here [Traveller site] we had to put signs on our gate […] ‘please don’t come in’ […] because there was this couple over there that had [COVID-19]. And then everybody was like, maybe we should put a sign on your gate so people don’t come in or, like, the postman doesn’t come in.Community-led solutions for testing and contact tracing involved reporting positive status to the community and community contact tracing (notifying contacts). Communities self-organised to warn each other of positive COVID-19 cases and contacts via phone, WhatsApp groups, via Facebook, or by putting signs on their caravan doors. A woman explained that people at her site came up with an idea of how to prevent others from coming close to a positive COVID-19 case (Quote 10) and she was encouraged by others to implement it when she had COVID-19. She also told us that if she ran out of household essentials, other residents would get these for her and leave them outside her gate. Her partner added that residents at the side are like “Quote 10 (Interview 22)Travellers […] are very good at spreading news” (Quote 12).As I say, it’s just, you phone one another, like I say, I’ve got some telephone numbers in there.Residents helped raise awareness about COVID-19 cases at their sites. They phoned each other and used Facebook to tell others they had COVID-19 so that they would not come to visit . When talking about this type of community-led contact tracing, one participant explained that “Quote 11 (Interview 26)[at the beginning] it was very frightening because it was like black plague, don’t say you’ve got it […] But now I think it’s got better because as soon as someone’s getting it now it’s straight up on social media they say, come back positive, anyone that’s been in contact with me stay away, self test. […] So as soon as someone had it whatever and they put it up [on Facebook] and made it public then everyone would tell everyone or they’d phone one another and say, so and so has got it or your children mixed with your children and this and that so they’d let one another know.Quote 12 (Interview 37)get a text straight away so then that person's avoided”. Men in the site would also remind other men with COVID-19 to self-isolate (Quote 13).“Someone or the lads will probably say to them, dude, can you do me a favour, will you isolate, you can’t come up, like, because there’s so many sick people here”One participant told us how if someone got COVID-19 at her site, they would “Quote 13 (Interview 41)I don’t think the government should be knowing where you’re at, that’s one thing I, I stand by strongly. […] that really scared me, like to think they was going to know where I was and what I was doing, sort of thing. Like why is that important to anything? If I have Covid, I’m going to tell you, or trust that I will tell you.Some participants said they did not want their whereabouts to be tracked by the National Health Service (NHS) COVID-19 app and had privacy concerns about the personal data recorded by the app (Quote 14). This mobile phone app tracked user movement, captured proximity between users, notified them when they had been in contact with a positive case, and allowed subsequent digital contact tracing of a positive case when approved by the user .I don’t Quote 14 (Interview 38)There was a lot of private sites, not council, err, Gypsy sites. With Gypsy men that run them. They absolutely stopped anybody coming on and off. And he [the man running the site] got the list for shopping or everything off the full site and he went. There was no men allowed off, or women. […] and he [the man running the site] was protecting the people on the site. Stopping from other residents coming round riding on, having a chat. So he took a lot of responsibility away off people what was already on there. […] So basically he did do a lot for the people what was on the site that was vulnerable.Community-led mechanisms also evolved to support others during self-isolation and lockdowns and to help with COVID-19 information. Participants described receiving and providing support from their communities, e.g. helping obtain food, helping others who could not read and write or who did not have access to the internet. A woman told us about a private (non-council) site where the man who ran the site organised shopping for residents and restricted movements on and off the site. (Quote 15):Quote 15 (Interview 26)We helped out like, mix and match or whatever, we all used to walk up and down here [in the site] with all masks on, we’d stand outside each other’s gates with masks on, and as soon as we saw like the council coming, we had to run indoors, because you’d get a fine, wouldn’t you, for being outside? Because […] It’s council land, it’s not private land. […] We even asked to be locked down [the council site]. We asked for the gates to be shut, and they refused, to stop anyone coming on here […] Because everyone on here had Covid, we didn’t want like, to like, say you to come on here, or the postman to come on here or anyone to come on here and get Covid […].There was solidarity among residents living on the same site. There was a case where residents risked fines to help each other when there were many COVID-19 cases on the site (Quote 16):Quote 16 (Interview 27)Travellers do look out for Travellers”.Participants talked about a shared sense of community on the sites and within Gypsy and Traveller communities in general. One participant said: “5We have shown how Gypsy and Traveller communities supported themselves and took collective action to protect health and contain COVID-19 in the context of chronic and ongoing marginalisation and discrimination, poor healthcare experiences, police harassment, surveillance and tough living conditions. Free access to home-administered virus test kits was crucial to enable communities to exercise agency and demand their right to health.Communities were highly motivated to protect themselves. Self-led solutions evolved, including community-facilitated testing and community-led contact tracing. Participants developed their own solutions to notify others about positive cases and carefully self-isolated after a positive test. The fact that test kits were free helped participants access testing and notify their own contacts, empowering communities to protect themselves and others. Their self-led solutions to contain the virus were not easy to achieve; they involved resilience, effort, and personal sacrifices (e.g. loss of income during self-isolation).The biopolitics of COVID-19 containment approaches , which hOther studies have found that Gypsy and Traveller communities are concerned about poor health conditions being associated with poor environmental conditions such as those at sites located in polluted areas . We founThe findings illustrate the paradox intrinsic to the biopolitics of public health containment approaches: individuals are asked to work to protect all “in the name of life and health” , p. 195,In contrast to the emphasis on individual responsibility of the ideal “pandemic citizen”  which unWhile we sought to engage the most diverse range of participants, we do not claim to provide a comprehensive picture of all Gypsy and Traveller community needs and experiences relating to COVID-19. Although the compressed timeframe for this study and concurrent COVID-19 Omicron-variant wave meant that we recruited fewer participants than planned in the north of England, it seems plausible that experiences outside our study sites would be similar to those described here, where a strong sense of community and mutual support mechanisms exist.Other studies in the general population, also found that support emerged from communities across England during the COVID-19 pandemic to provide practical and essential help to residents  . StrongeOur study shows how for those living on the margins, exercising their citizenship to claim their right to health in the context of infection emergencies, requires community support and self-reliance on community networks and resources. This is likely to be relevant to other marginalised communities and outside our specific study locations. Free, easy access to rapid home testing was crucial for marginalised communities to take protective action against COVID-19, to empower themselves to exercise their right to health. Yet free access to testing and resources is not enough for individuals to act with agency and self-regulate their own life to manage the risks of the virus, as is assumed in individualistic public health approaches to virus containment.An enabling policy, material, and social environmment is crucial for people to engage in relational “acts of citizenship”  by whichCommunity-led solutions to infection containment must be at the centre of public health responses. Community action can open up novel infection control strategies, but communities must be supported to do this. Mutual aid strategies and community collaboration developed by and for communities should receive material, political and technical support. This is crucial; Gypsy and Traveller communities have had limited access to support for self-organisation compared with other groups .Communities should also be at the core of co-production of pandemic preparedness and response strategies, and wider health services, to ensure these are inclusive and meet their needs . InstituAlicia Renedo: Conceptualisation ; Data curation; Formal analysis; Funding acquisition; Investigation; Methodology; Project administration; Resources; Supervision; Writing - original draft; Writing - review & editing.Rachel Stuart: Conceptualisation (ideas); Data curation; Formal analysis; Investigation; Writing - original draft, Writing - review & editing.Charlotte Kühlbrandt: Conceptualisation (ideas); Data curation; Formal analysis; Investigation; Writing - review & editing.Serena Farrow : Investigation; Analysis interpretation; Writing - review & editing.Pippa Grenfell: Conceptualisation (ideas); Data curation; Formal analysis; Investigation; Writing - review & editing.Catherine McGowan: Conceptualisation (ideas); Data curation; Formal analysis; Investigation; Writing - review & editing.Sam Miles: Conceptualisation (ideas); Data curation; Formal analysis; Investigation; Writing - review & editing.Cicely Marston: Conceptualisation ; Data curation; Formal analysis; Funding acquisition; Investigation; Methodology; Project administration; Resources; Supervision; Writing - original draft, Writing - review & editing.Author order is difficult to assign in a complex project with multiple contributions and for this reason authors 4-6 are listed in alphabetical order by surname. We consider their input to be equally valuable to this paper.This paper is independent research commissioned and funded by the National Institute for Health Research (NIHR) Policy Research Programme. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR, the Department of Health and Social Care or its arm’s length bodies, and other Government Departments.The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.


Postpartum home-based midwifery care is covered by basic health insurance in Switzerland for all families with newborns but must be self-organized. To ensure access for all, Familystart, a network of self-employed midwives, launched a new care model in 2012 by ensuring the transition from hospital to home through cooperation with maternity hospitals in the Basel area. It has particularly improved the access to follow-up care for families in vulnerable situations needing support beyond basic services. In 2018, the SORGSAM (Support at the Start of Life) project was initiated by Familystart to enhance parental resources for better postpartum health outcomes for mothers and children through offering improved assistance to psychosocially and economically disadvantaged families. First, midwives have access to first-line telephone support to discuss challenging situations and required actions. Second, the SORGSAM hardship fund provides financial compensation to midwives for services not covered by basic health insurance. Third, women receive financial emergency support from the hardship fund.The aim was to explore how women living in vulnerable family situations experienced the new early postpartum home-based midwifery care model provided in the context of the SORGSAM project, and how they experienced its impact.Findings are reported from the qualitative part of the mixed-methods evaluation of the SORGSAM project. They are based on the results of seven semi-structured interviews with women who, due to a vulnerable family postpartum situation at home, received the SORGSAM support. Data were analyzed following thematic analysis.Interviewed women experienced the early postpartum care at home, as “relieving and strengthening” in that midwives coordinated patient care that opened up access to appropriate community-based support services. The mothers expressed that they felt a reduction in stress, an increase in resilience, enhanced mothering skills, and greater parental resources. These were attributed to familiar and trusting relationships with their midwives where participants acknowledged deep gratitude.The findings show the high acceptance of the new early postpartum midwifery care model. These indicate how such a care model can improve the well-being of women in vulnerable family situations and may prevent early chronic stress in children.The online version contains supplementary material available at 10.1186/s12913-023-09352-4. Based on evidence that lifelong health and human development are strongly influenced by experiences during the first years of life, early childhood interventions are increasingly the focus of research and policies –5. InterPositive effects on developmental outcomes have been documented for three types of family support and strengthening: quality services, support, and skills building . HoweverOnly a few, mostly Scandinavian, studies have addressed the perspective of parents receiving postpartum home-based care by midwives, and research on the impact of such care on infants and their families is still scarce. A Swedish study on first-time parents’ experiences of home-based postpartum care after early hospital discharge showed that midwives took a supporting role and strengthened parents’ self-confidence . In a NoBecause the literature so far has largely focused on the context of extended home visiting programs and outcomes for families in vulnerable situations , 26 and In Switzerland, early home-based postpartum care is mainly provided by independent midwives and family nurses . OrganizIn the Basel area, a Familystart network model has been running since 2012. Due to the guaranteed access to postpartum home care, midwives regularly visit disadvantaged families who may have fewer resources to organize postpartum care themselves, yet need support beyond services covered through basic health insurance. Set up in late 2018, the project “SORGSAM – Support at the start of life” aimed to offer vulnerable families improved assistance in dealing with complex postpartum situations . The SORWe specifically aimed to investigate how women in vulnerable family situations experienced early postpartum home-based care by independent midwives provided in the context of the SORGSAM project, and how they viewed the impact of obtained care.The study and this report were conducted following the Consolidated Criteria for Reporting Qualitative Research (COREQ) . The resThis article reports findings from the qualitative part of the mixed-methods evaluation of the SORGSAM project in the area of Basel, Switzerland . It is bOpen-ended, narrative-generating interview questions were developed in consultation with the research team and included three thematic blocks: (1) perception of the postpartum situation, (2) perception of the midwife’s care, and (3) perception of the current situation. Towards the end of the interview, participants could talk freely about topics that were not previously addressed but were important to them. An additional document shows the interview guide in detail . For the purpose of publication the guide was translated from (Swiss) German into English.Criterion-based maximum variety sampling was used to select participants based on two available SORGSAM routine documentations, namely: (1) reports of the SORGSAM reimbursement from the hardship fund and, (2) reports of provision of first-line telephone support provided by a specialized midwife for colleagues encountering complex family situations. The criteria consisted of poverty, migrant history, single parent, health, and/or psychosocial stressors to maximize the diversity of complex family situations. Women were eligible to participate if they received care from a Familystart midwife who requested SORGSAM support in 2019. Individuals with severe mental illness, and/or receiving support from a midwife who were not Familystart members, and/or having language barriers were excluded. The selection based on the sampling criteria was documented, discussed, and validated by the team.Eligible participants were approached by their midwives and informed about the study. When they were interested, the informed consent packages were sent via mail. They had sufficient time to read through the documents, clarify questions and consider whether they wanted to participate in the study. Written informed consent was obtained from all participants before the interview.Among 55 eligible participants, nine agreed on a contact date for an interview, whereas 32 refused to participate or did not react; four persons showed insufficient language skills for interviewing, and 10 could not be reached. Two participants did not attend the agreed appointment due to the illness of a family member. As they were no longer reachable afterwards, this was considered as a withdrawal from participation. Once seven interviews were completed, recruitment had to be suspended due to the financial constraints of the project.Between February and July 2020, a senior researcher with a background in health and social sciences conducted seven interviews in the area of Basel in the German language. Each participant was free to choose the place of the interview. The first interview was conducted in February 2020, face-to-face in a café. Due to the increasingly tense pandemic situation, all subsequent interviews were conducted virtually via Zoom. The virtual approach appeared to be convenient for participants, as they did not have to find childcare for their children. All interviews were audio-recorded and lasted approximately one hour. The semi-structured interview method with open-ended questions allowed delving into participants’ perspectives so that women could talk freely about their experiences. Observations on the research process including the pandemic situation were noted in a reflexive diary by the interviewer.After transcription of the interviews data were analyzed following Braun and Clarke’s thematic analysis , 37, a mOf the seven participating women, five had a migration history .Women reported how they experienced the care provided by midwives as shown in Fig. The sub-theme “what it comprised” is composed of the thematic aspects of “mother-child-care”, “midwife presence”, “coordination and networking”, and “material support”. “Mother-child-care” included ordinary aspects of midwifery care in the postpartum situation, such as bathing the newborn, checking wound sutures, breastfeeding support, assuring weight gain of the newborn, and checking for emotional distress and/or anxiety/depression. To focus on the three further thematic aspects that go beyond ordinary midwifery care, mother-child care was not elaborated on in more detail.“Midwife presence” emerged as a very central element in the women’s narratives. Women described the feeling that midwives were always there for them and their families, and even in case of emergencies:“She was always there when we needed her, always…” (Interview 1).“When I need help, when I write, she always calls.“ (Interview 4).“She really helped me and never minded, even if it was raining.“ (Interview 6).Thus, the reachability and availability of midwives appeared as a crucial aspect to ensure emotional, parental and material support to promote feelings of security - especially in case of uncertainties at home. This was the case for example, when women were worrying about how to deal with the newborn, how to feed the baby, or if there were no nappies due to financial constraints, but also if they were fearing violence. This kind of accessibility and reliability to medical, social, and emotional support appeared especially important for women who felt challenged having to navigate through the health system and therefore they were able to receive the help at the time they needed it:“[Doctors] were often not available,…nobody came by…and I was…also not so well organized, but there was…a big gap…I somehow think that the midwifery care was a very personal, individual care.” (Interview 6).The low threshold of accessibility and reliability, e.g. to text midwives and receive an answer via SMS, appeared as a supportive cornerstone. However, it was not only the perceived reachability and availability of the midwife that was important for the women, but also that the midwife’s presence at home was felt to be without any apparent time pressure:“I think it was important for us that she was simply there, that she always took her time, sometimes she was even there for two hours and didn’t look at the clock, … that she wasn’t in a hurry, but that she took her time and asked three more times, with, um, is it everything now, is there anything else?… Yes. That was good.“ (Interview 7).The quotes suggest that the women perceived an unconditionality in the midwifery care received, presumably creating feelings of trust and being taken seriously. The women also reported that the midwife was not only there as a contact and care person for them and the newborn, but also for the whole family, as evidenced in the next quote of a woman who experienced stillbirth:“Yes, and I liked the fact that she looked after us as a family and not just after me as a woman, because there wasn’t much to control in terms of the baby…that the family was looked after, that the brother was looked after, asked how he was dealing with it, right? Things like that.“ (Interview 7).Furthermore, one woman described a situation of domestic violence, in which her midwife provided her with emergency help:“Because once I was in a situation there, I couldn’t call the police or get help somehow, then I wrote to her and she got the police for me, you know?…I didn’t know what to do, I didn’t have a car, my baby was sick…so, or violence,…something happened to him,…I couldn’t go to the hospital right away, then she helped me, even though it wasn’t working time, or, so she came with her car, she helped me go to the hospital”. (Interview 6).Overall, the thematic aspect of “midwife presence” indicates that the interviewed women appreciated the midwife’s accessibility, availability, and continuity of care without time pressure. They described midwives as “carers” for their families and as trusted confidants - especially for themselves, and who were called in during emergencies such as in cases of domestic violence.Women interviewed reported on the different forms of “coordination and networking” functions of midwives. They described midwives’ work as mediating, organizing, and coordinating services and institutions to improve complex domestic situations. Midwives were reported to have organized parent-child counseling, breastfeeding counseling, social services, and home care services for domestic help (e.g. the Red Cross). Women also indicated that midwives contacted various doctors, police, and cantonal offices. The women interviewed described this central interface function:“And, she gave me a lot of contacts…la Leche ligue, and now I’m a member and other mothers…that was very good.“ (Interview 1).“So yes, so I was sad, so not good, since the birth and yes, the midwife, has found such a person…a therapist, and I had gone there with (child).“ (Interview 2).The range of this interface network function went from quick fixes to complex coordination activities as illustrated in the following example:“At the beginning, she just put away the toys…and then afterward she…asked at Spitex [home care service for domestic help], can someone cook there? And, do a bit of housework and a bit of cleaning. And they said, no, they just do the flat a bit. And then she …first asked in Canton X because the children were born there and then,…but I live in Canton Y…then she had asked if she could organize someone from the Red Cross if they would take over something. Then they said, no, have to ask Canton Y. She called Canton Y, and then they understood my situation, then Canton Y just took over and also organized it further.“ (Interview 4).The midwifes’ networking activities included professional groups or organizations or institutions, and networking among mothers. Women with a migratory background who felt or were alone mentioned this positively and emphasized the important role of their home-country language in feeling understood:“Because the [other mothers] speak Spanish and it was…my midwife was the midwife of this mother and my midwife, and [she said] I know other Spanish mothers - do you want their phone number? And she asked for the other mother too, and we made contact and we are friends.“ (Interview 1).Beyond midwife’s care and coordination support, women also described to have received material support, ranging from getting diapers to breast pumps to children’s clothes:“If I need some clothes or something bed and things like that…if I need that…all the organizing…for cot or something, you know…I didn’t buy much and she also tried to get [this] organized. That was also…great, how do you say, yeah because everybody thinks only about one health side, the other side…she helped on both sides, yeah.“ (Interview 4).Women also received information and knowledge about where to obtain assistance in case of financial bottlenecks, e.g. where to get second-hand clothing and toys free.The sub-theme “what it meant” is composed of the thematic aspects of “filling the gap”, “people take center stage”, and “great responsibility”. The interviewed women described the overall postpartum care received not only as extensive, but also contrasted it with the care provided by medical doctors where they described midwives as “filling a gap” in the care system:“With the doctors a bit like that…so, ‘I do that, that’s my problem…They don’t see a collective problem…and he just looks at the child. I find the medicine a bit separate…The midwife! it’s in the middle…she’s worked with both of us so far, so that’s so her job, she’s doing great.“ (Interview 2).Women also described as being seen and treated by the midwife as a person, which also included much of their emotional situation.“Because in hospital you are a patient with blood pressure, this and that and the values, but at home, with the midwife, you are a person with feelings and yes…that was a completely different approach. (Interview 7).“I mean, it isn’t just the baby what the midwife works on…she helped me in other ways too.” (Interview 6).“I felt that the midwife took more responsibility than she…had to.” (Interview 2).Women also emphasized the great responsibility that this entails for the midwife:The quotes highlighted that women understood the care they received as comprehensive postpartum care that occurred at the interface between somatic and psychosocial care, and as interconnecting between professions and institutions. This meant for women that a gap in postpartum care was being filled, which they described as a great responsibility for midwives.The theme “psychosocial and emotional impact” developed from the data, covering the sub-themes “psychosocial relief”, “empowerment”, and “feeling grateful”, see Fig. “Helped me to relax a bit, because I was always very stressed and so (groans), and I…was breastfeeding (child),…so and she helped me to relax a little bit like that, and to breathe…and to get a little bit, yeah, calm, so that was…that was good”. (Interview 2).“It all sounds like a commercial now…she couldn’t have done it better. She was also great interpersonally…That really supported me insanely.“ (Interview 4).What appeared as important for the interviewed women was that the received care was experienced as personal and emotional, and was labeled “human”. This aspect was particularly memorable for the interviewed women as they described the midwife’s care as supporting “physical, emotional recovery and relaxation” which helped them to relax:“I could trust her…that was important for me, that I could trust her, I could also talk so openly with her.” (Interview 6).“She was actually my contact person number one and I think that was actually almost the most important thing.” (Interview 5).The quotes indicated how women no longer felt alone due to the midwife’s presence and the interpersonal relationship, which supported women in dealing better with the new postpartum situation. They also stated how important it was for them to be able to “build and experience trust” with the midwife:The quotes underlined the importance of interpersonal closeness and trust so that women could open up and thereby feel relief and relaxation at the same time. They experienced a reduction of concerns and stress.“That made me a bit strong,…um, I don’t know, is there this expression in Switzerland or German, that you can stand on your feet? [Yes. That was like that for me. So I know where, where I can go for help if anything happens…yeah…And that made it a bit easier, the situation made that, became a bit easier. It’s not easy, but it has become easier.“ (Interview 3).“During the birth or after the birth a little bit so, just, like nice, so, just, so, just, um, agreeing with the situation or so a little bit braver, we can help, we can organize something, not worrying or so a little bit, yeah, so just with the others, just helping would be nice (laughs)” (Interview 4).From the different interview texts, it became manifest that the women not only felt relieved by the comprehensive midwifery care but that they also felt strengthened to survive the difficult life situations. The following quotes expressed how women felt to “become stronger and courageous”, also through “competence and knowledge enhancement” on where and how they could obtain help:“So yeah, now it’s, um, now it’s really like, I hope, I don’t know, but like…right now I’m somewhere good with my baby” (Interview 6).”The midwifes’ presence provided security and confidence to better deal with and accept the current situation so that women described, “feeling good and safe”:Through these different forms of emotional and social self-empowerment, they described feeling “good and safe” again.“She just…helped a lot, a lot, and I’m very grateful that she kind of saved my life, twice.“ (Interview 5).Starting from the question about changes compared to the current situation, women made statements that indicated, in retrospect, a positive assessment and gratitude for the care and support they had received that still lasted at the time of the interview. This was exemplified in interview 6:“She helped me in many ways, you know…in clothes, in healthy, in emotional, she was … a person…she did so many things with me, helped…she did it from the heart.“ (Interview 5).“She has been like a god when she asked like that and organized the help like that, that’s, yeah, that’s a big help, you know? I won’t forget that.“ (Interview 3).This gratitude was rooted in the comprehensive support, which was described as “coming from the heart”, as it was formulated in interview 5:The quotes illustrated both the gratitude towards the midwife as well as her central role, possibly because the interviewed women have had little support in their vulnerable family situations.Our study showed that women living in vulnerable family situations and who were cared for in the context of the SORGSAM project, evaluated the early postpartum home-based midwifery care as a relieving and strengthening experience. Midwives not only ensured the mother and child’s postpartum health but also coordinated further care and opened up access to appropriate community-based support services. Mothers described the received care as comprehensive, personal, and reliable, allowing them to better deal with complex family situations. They reported that it eased the burden of social isolation, made it easier to talk about challenges such as fears and violence, and led to de-escalation in situations of tension. They expressed how receiving care resulted in stress reduction, increased resilience, and empowerment and that it enhanced their mothering skills and parental resources.Our study highlights that the benefits of early home-based midwifery care for women in precarious family situations are rooted in the close and trusting relationship with their midwife, resulting in deep gratitude for this experience. Participating women described their complex life situations and commented in detail on the supportive, comprehensive midwifery care they experienced. They reported that they felt strengthened by the continuous and easily accessible midwifery care during the uncertain phase of the early home transition, in terms of health, as well as social and emotional aspects.”Midwife presence”, provided them with emotional and material equipment support, and supported them in accessing different community networks. This kind of supporting role by the midwife was described before, as in the study of Johansson in healthy families after early hospital discharge in Sweden , or in aOur findings exemplify that stress in the very first phase of life can be mitigated by early midwifery home care even in very difficult social situations. Mothers described impacts on themselves in terms of calming down, de-escalation of situations, strain relief, and stress reduction. Grylka-Baeschlin et al. found that home-based postpartum care eased the burden on families and reduced stress . This shpostpartum are in line with several studies reporting that home-based early midwifery care had positive effects on parenting and self-confidence [A key finding of our study relates as to how early midwifery home care strengthened self-confidence and resilience, including knowledge and assurance on access to further support services. Women described that they felt to be seen and treated as “a person”, how they became ‘stronger and more courageous’. They furthermore reported increased competencies and knowledge of where to get help, and impressively described increased resilience. These findings nfidence –26, 38. The positive picture given by postpartum women may be too optimistic due to a participation bias. Indeed, enormous efforts were needed for the recruitment of participants, and among the 55 eligible families, around half did not react to the study invitation or refused to participate. Ten women had no valid address, and four women had difficulty mastering the German language and this appeared to be too limited to participate in an interview. In particular, no woman could be recruited who was involved in a child welfare issue. Among the participants, six women had a migrant history, thus, migrant women were well represented.Saturation is usually accepted as the criterion for the number of interviews conducted. Saturation is described to be reached - depending on the research questions and study population - at approximately 12 to 20 interviews, but the basic elements for a thematic ordination are reported to be already identified at six interviews . Even thFurthermore, the information provided by the interviewed women was very congruent with the information in the midwives’ case documentation . In thesIn conclusion, our findings are supportive of a potential beneficial effect of postpartum midwifery care for the improvement of resilience and well-being of women in vulnerable family situations. Midwives appear to be important players in early childhood interventions with a comprehensive biopsychosocial approach breaching the interface of medical and psychosocial care. To allow midwives to make full use of their potential, it is necessary to install programs such as SORGSAM, which reimburse midwives for their coordinative services and give them access to a hardship fund enabling them to provide short-term financial support to families in acute need. Investing in midwifery services may be understood as a direct investment in earliest childhood interventions as described by Magistretti Meier  to preveBelow is the link to the electronic supplementary material.Evaluation SORGSAM: Interview guide with women experiencing vulnerable family situation postpartum at home


The term ‘data’, ubiquitous in the Digital Age, etymologically refers to a piece of information ‘given’ (datum). In this article, I argue that the term ‘capta’ would be more accurate, since information is often taken from us. Capturing information replicates normative elements of abuse, surveillance, control and harm becoming central and problematic within the emergence of the ‘onlife’. I illustrate my argument via an ethnomethodological consideration of my attempt to resist the unwilling capture of personal information. Since 2016, I have engaged in what I call an ‘offlife’ existence, phasing out all devices and platforms that covertly capture personal data. However, my experiment has proven problematic, impractical and has even been perceived as being anti-social, especially in light of the Covid-19 pandemic. In the conclusion of this article, I consider the problematics of engaging in some form of resistance to data collection. The word ‘Data’ originates from Latin: it is a datum; something given. Thus, a piece of something, namely, a piece of information, ‘handed’ consensually out. The use of ‘data’ is a recurring problem of our Internet engagement. ‘Data’ are taken and kept from users – analysed and monitored, on a regular and spiralling and “liquid” basis . This me In this context, the connection of data and harm, including the cybercriminal and toxic elements of our constantly connected devices, becomes a focal element of our onlife experience. In contrast, my experimental offlife ecology proposes a perhaps utopian environment where users are more in control of their information and their data. The requirement is for our data – even when published voluntarily – to free itself from a capta establishment that perpetuates the conditions of having something taken and used covertly. Such an approach appears central in creating awareness and at the same time a guideline for resistance to avoid automatic flagging of those who are not integrated and limit the control of the biopolitical apparatus .The progressive disconnection that I embarked on was systematic but phased. After quitting all social media , since 2018 I began to engage with my smartphone only as a sim-free tablet and used a GSM-only device to make calls. The plastic has heavier, and the screen is significantly less fragile. Internet navigation feature was exceptionally limited, yet somewhat functional. It could not offer any playback option, nor download any picture or file. When accessing email via the mini browser, I had to insert my email and password every single time, confirming that there appeared to be no cache or cookies. The navigation did not know my location, and I never fully grasped what my IP address was. In this odd grey area, I felt vaguely protected and anonymous. My device never featured any advertisement or requested Cookie consent. I expected the browser to simply accept cookies as default, but I am not sure whether this was the case.My so-called ‘feature-phone’ lacked sensors – that normally in smartphones passively capture and calculate all sorts of metrics , and was generally tougher built than normal devices.Following the purpose of my offlife approach, I decided still in 2018 to unsubscribe from all those that I considered capta-gathering online services, including streaming providers of video/film and music media. Instead, I opted towards ‘things’ that offered per se a service that had no hidden, monitoring potential – similar to the more recent considerations of Navigation and directions without a GPS service were one of the most controversial features, meeting with the greatest resistance from friends and peers. In discussing directions, I oftentimes ended up seeking locations on somebody else’s map provider. Many peers sensed this as a ‘parasitic’ behaviour on my behalf: without my ‘capta’ of other users’ data, I could not find my whereabouts. I ‘compromised’ my commuting by using an offline portable Navigation device while driving, to which I manually updated the map via SD card. However, when on foot I would use an offline map app strictly disabling GPS.Through these practices and recognitions, a slow but evident ‘skimming’ of my screen time was palpable. Through my capta disengagement, I came to feel that not only my data but also my attention was less ‘captured’, and thus stolen from me. To date, mixed arguments have been forwarded on the actual validity of digital detox programmes  – a pracWithin this context, my GSM-feature phone device did not seem powerless, quite the opposite. It appeared as a tool that neutralised the harm, to my persona and towards others. I could be trusted, as I had nothing to hide. Anyone could pick up my phone, unlock it and see my texts and calls. No sensible biometric data were stored, and no sensitive data were needed. In fact, my obliviousness to my phone’s whereabouts led me to lose it on repetitive occasions. The notoriously harmful perspective of the Fear of Missing Out (FOMO) syndrome resolved itself with the sudden realisation that there was not much that I was missing out on. Or better, that more could be achieved, with less. My feature device was an object that simply had no appeal and no value – nothing much to store and nothing much to hide. Less precious data, minor menacing capta. And by that, again increased considerably my sense of belonging to the people surrounding me and indifference to other more expensive, more problematic, more time-consuming and potentially harmful tools.With the outbreak of the Covid-19 pandemic in early 2020, the ‘successes’ of my offlife engagement , that I directly associated with captaveillance, became problematic. Since early 2020, in concomitance with the harshening of the virulence restrictions, I could no longer rely solely on newspapers, cash money, hard-copy entertainment or media in general, as I had done, with some difficulty and great satisfaction, until then. Emergency social isolation and restrictions made the digital world an inevitable portal to access and engage with all information, media, transport and transaction. In the name of health hazards, finding a digital compromise has clearly been a necessary price to the grounded ideas of digital resistance . With thNevertheless, the problematics that I traced in the replete scenario of onlife captaveillance have become ever more significant. Corporations and state agencies, through contact-tracing apps and the Covid Vaccine Certificates, proved extremely efficient and influential in using ‘captivating’ elements to control and ‘lower the curve’ of Covid infections . ContracIn Italy – one of the notoriously most casualised and restrictive European countries during the pandemic – Foreign Minister of the time Luigi Di Maio expressed dismay towards whoever was reluctant to use contact-tracing apps. Di Maio argued ‘ironically’ that corporations have been using our data for the past decades with hardly any user being worried  – thus iPractices of resistance to these forms of surveillance practices, no matter how morally ambiguous and socially harmful in different circumstances, are still today in constant debate . To resiIndeed, the point of how ‘capta’ may be wrongfully gathered, especially so under exceptional circumstances, is well reported see . LucianoFor 5 years, I attempted a form of offlife friction that would loosen the ‘vigilant’ grip of the onlife. The suggested solution, promoted with my auto-ethnography, was to attempt an offlife subcultural existence, even if only partially. My aim was to experiment with ways of ‘life’ that did not produce endless content and ‘capta’ food. My solutions were mostly practical, mixing obfuscating software with physically self-limiting my digital engagement.However, it became very quickly clear that smart devices, phones in particular, were particularly efficient in ‘capturing’ attention, not only data. Everything in it is designed to lock you to the screen – pick it up as often and as long as possible. While this sounds trivial, it becomes particularly impressive and truly demanding when attempting to ‘opt-out’.It has been suggested that the digital scenario itself offers ideal conditions for a denial of responsibility, as a ‘result of forces beyond their control’ : 5. My pSuch consideration brings possibilities for further study, over the criminalisation of this kind of resistance – or indeed, specific instances and occurrences for the securitisation of data. This also requires further work on policy work, analysis and design of platforms and devices currently in use. In the time being, we can rely on platforms, software and add-ons that can scramble, obfuscate, limit and confuse our data – we can decide to opt out (semi) drastically, or struggle to maintain our captaveillance at bay. However, on a final note, once you play by the rules, going back is as hard as ever. Contactless payments are impressively swifter, simpler and by now socially accepted rather than cash. Clicking ‘accept’ on a website and when downloading an app is undeniably easier and more convenient than opting out – or not using it all. And convenience is often trivially associated with a progressive better, clearer and faster functioning for all of us. From this perspective, one can only slowly realise that although I was looking at corporate responsibility and the harms involved in capturing information, my research in ‘disappearing’ from the system ‘appeared’ instead ethically troubled. I was being inconsiderate to the dynamics of distress my approach generated towards others: it was them sensing my actions as problematic. My alternative did not prove a real alternative. Already before Covid-19, I had noticed how my offlife approach appeared unsensible and anachronistic. It seemed to create greater friction in the short term in societal values than in the technologies themselves. By the middle of the pandemic, participating in capta-dynamics was truly a necessary condition that allowed very few if any alternatives. Captaveillance, it would seem, by now is truly the norm.The Guardian columnist It is uncertain how long GSM mobiles will be compatible with current antennas , and wheHowever, this comes at a price. Other than the element of capturing even more information from users and citizens, the protection of information was accompanied with evident flaws , abuses