Purpose: Self-managed institutional homeless programmes started as an alternative to regular shelters. Using institutional theory as a lens, we aim to explore the experiences of stakeholders with the institutional aspects of a self-managed programs.Method: The data we analysed  were generated in a longitudinal participatory case-study into JES, a self-managed homeless shelter. In our analysis we went back and forth between our empirical data and theory, using a combination of systematic coding and interpretation. Participants were involved in all stages of the research.Results: Our analysis revealed similarities between JES and regular shelters, stemming from institutional similarities. Participants shared space and facilities with sixteen people, which caused an ongoing discussion on (enforcement of) rules. Participants loathed lack of private space. However, participants experienced freedom of choice over both their own life and management of JES and structures were experienced more fluid than in regular care. Some structures also appeared stimulated self-management.Conclusion: Our analysis showed how an institutional context influences self-management and suggested opportunities for introducing freedom and fluidity in institutional care. Total institutions are “staging a difference between two constructed categories of persons”  able to access housing. Participants and peer workers are in charge of daily and strategic affairs in self-managed shelters   able to obtain independent housing, because of financial and personal problems and/or issues in accessing housing because of a shortage in social housing , 72 people joined, from less than a day to multiple years. If we exclude those who leave  immediately (stay less than three months), the average length of stay is around fifteen months. Of the 72 participants, 51 stayed for more than three months, of whom 32 were explicitly spoken to as part of our research , from seventeen others we have secondary information , such as next place of stay and reason for leaving .Our formal data consists of interviews with participants (N = 27), peer workers (N = 3), social workers (N = 2) and other stakeholders (N = 10), the latter were either policy advisors from the mother organization of which JES is part, who supported the development of JES, or representatives from partner organizations such as housing organizations, the municipality and local social work organizations). Some of the participants, peer workers and social workers have been interviewed multiple times, resulting in 56 interviews. Eight participants were interviewed during their stay at JES, most were interviewed afterwards, varying from several weeks to several years after they left JES.The interviews come from two sub-projects. The first was a case study into JES (2009–2010), for which open interviews Bryman,  were helThe second sub-project (2013–2014) focused on how former JES-participants looked back at their participation using a semi-structured topic-list Bryman, , and howInterviews for the first study have been done by two academic researchers, one of whom is the first author. Interviews from the study into former participants have been done by couples of participants and students, under the supervision of experienced researchers, one of whom is the first author. All interviews, both from the first and second study, were recorded and transcribed. In addition to the interviews, documents delivered by respondents to the first author were analysed .From the start of the first study up until the present, the first author engaged with participants, peer workers and social workers from JES, based on an ethnographic and participatory approach .“In regular shelters, everyone gets the same standard package of care. Everyone is treated as a baby” (participant/peer-worker).Participants loathed regular programs for an abundance of rules, unwanted interference from staff and a lack of acknowledgement of their capacities.“It was a delight. You get your own keys, you can enter when you want. You can have input to everything concerning JES, in project groups, during meeting. Yes that was nice, that you could contribute“ (participant).In JES there was a strong emphasis on freedom of participants. Participants experienced self-management in different ways. On one end of the spectrum, participants experienced JES as very empowering.“There were people, who did nothing, truly nothing, to improve their situation. They didn’t want to move on. They resigned themselves. They had food, they could sleep, could watch television and it cost them almost nothing” (participant).On the other end of the spectrum participants were negative, sharing disappointment about JES, both in relation to other participants and to a lack of freedom. In between those two ends of the spectrum were participants who were not engaged with social processes and the management of JES, although they enjoyed the freedom JES offered to work out their problems in their own way. The same freedom led to some participants getting stuck in what participants call “the fyke of self-management” (the trap of self-management), they adapted to live within JES, without making progress, similar to the process of hospitalization.“The new group [of participants] got no chance [… .] They behaved like in all shelters; there was no ownership, it didn’t feel like they had any influence [… .] so they did nothing” (Coach).All participants, even those who were in general positive,  described negative aspects of self-management, often in relation to having to live and manage together. Many of the experienced negative aspects mimicked the described critique of regular institutional care, such as a focus on rules, lack of acknowledgement of capacities and interference from others .The mimicry was a surprise to us and to some of the participants.Although a surprise at first sight, further exploration of the data, in interaction with themes stemming from literature, revealed several similarities with regular programs such as the participants living together within a shared space, being part of a formal organization and the development of social distance between participants.“You have to have a thick skin, because the people that are here, they are all homeless for a reason. [… .] They have a past, of which, sometimes, they are not proud, so they are suspicious [… .] waiting how the wind blows. They try to go for their own benefit” (participant).Both JES and regular programs consist of a physical space, where people live together in an unnatural group. Participants had personal problems, both pre-existing, caused by being homeless or as a consequence of mortification in previous care. Many participants described forms of learned helplessness and a general distrust towards others, either about themselves or others.“ … . it seemed like there were more rules than in a shelter [… .] with food, you had to be there in time. If you were five minutes late, they wouldn’t serve you food, as if you were a small child” (participant).“I think you have to be clear in the rules [… .] And if you don’t follow the rules, than we’re done” (participant).JES is relatively small compared to regular shelters that in the Netherlands host up to 60 people. Nevertheless, participants mentioned that living “with sixteen men with backpacks full of pain and sorrow [… .] all those emotions, at a certain point, is bound to collide” (participant). Participants of JES lived in a shared building, with shared facilities, a shared living room and often a shared bedroom, which caused tensions. Participants varied though in both what they experienced as negative about living together and to what extent they experienced it as negative. Some participants complained that they were forced to do the dishes, others complained that they had to reproach fellow participants about doing the dishes. Similarly, some participants complained that there needed to be more rules, on household chores, substance use and likewise issues, while others complained that there were too many rules.Many participants of JES complained they had too little private space and that there “are always people, you are never alone”, possibly even more so than in a larger program with more opportunities for withdrawing. A majority of the participants we spoke to after they moved to independent housing relished their new privacy. Some stated that they missed the company of participants. The latter were positive on social life within the self-managed programs. Other participants explicitly referred to distrust in their communication with participants. “I know exactly how much I can tell, and how much I can’t tell. Because if you told something in confidence, within ten seconds someone else knew it as well” (participant).JES was forced by the municipality to become part of a regular organization, to be eligible for welfare funding, which founding participants and social workers loathed. JES was confronted with similar organizational influences as regular programs, such as having to adhere to safety regulations, being financially accountable and handing over some control to the mother organization, although JES appeared to have a high level of discretionary space. As a consequence of the housing shortage in Amsterdam, the municipality issued guidelines as to who could get housing through JES, thereby influencing who could enter JES. Several of the participants stated that they felt powerless and distrustful towards large organizations. “We have no say, you know. [… .]. They  have certain ideas. [… .] They say [… .] we’ll take it into consideration, but in the end, they decide for themselves” (participant).A final point of mimicry was (perceived) social distance between participants. Many participants did not engage in self-management, beyond joining house meetings. Often only a small group actually managed JES. Some participants and peer workers were happy with the division, stating that “somebody needs to be the boss” (peer worker), a viewpoint that was mostly shared by those in charge, with support of several of those not in charge. Some of those less engaged, were satisfied with not having to manage the program themselves, as long as those who were, did not interfere with their freedom. Others however stated they disengaged because they felt unwelcome, stating that “the bosses of JES” decided everything and were not interested in the opinion of other participants. “I asked the chairman if I could help and he said ‘no’”(participant).Those managing the program stated they were welcoming to participants, even though they did not come to meetings, did not contribute ideas or were unreliable. Therefore they had to manage the program themselves. New participants joined an existing program, with established rules and norms, which they could not easily change by themselves, limiting a feeling of ownership. “There was already something there, so their beds were made, and that makes it harder to get the process going” (peer worker). Having the opportunity to engage in the management of a program is associated with empowerment, according to our findings and others Brown, .The engagement of participants changed over time. The participant who said that he was disappointed because he was not able to engage, later said: “[now] I get the chance to get involved”. Over time the first author has observed multiple instances of an established group of participants moving out and a new group becoming established. Or as one participant states: “I’ve been here for three years, so it’s been good, constructive, supportive, bad. I’ve seen it all”.“That I had my own place. That I had my own key. And that I could decide for myself what I did in life, you know, the personal freedom you have [… .] In other shelters, you were tight to schedules and don’t you dare be late, you don’t have that [at JES].” (participant)Although JES and regular programs share several characteristics, two differences distinguish JES from regular programs: a higher degree of (experienced) freedom individually and collectively and more fluidity in structures that do arise. The freedom is symbolized by a key all participants in JES got.Participants had different conceptions of what freedom in self-management meant and to some extent were free to make their own use of the offered freedom, as discussed in the previous sections.Participants made, enforced and dissolved rules together. Both participants who found rules to harsh or not strict enough, were able to discuss and decide on the rules together. Structures and interaction patterns, such as division of roles, appeared to be relatively fluid. Participants could choose from an array of roles  and developed and changed their role over time. The roles peer workers had and how they used their lived experience differed, from facilitating self-management to maintaining order. In some periods, the relation between peer workers and participants mimicked the relation between staff and clients in regular programs, both positive  and negative . “[The peer worker] wants to do everything. He almost wants to run your life” (participant).“Participants disagree to what extent I as a facilitator should interfere with people who, in the eyes of other participants, do not move forward [… .] I find that difficult [… .] they need to come to me [… .] but if someone keeps on struggling [… .] when is it legitimate to interfere?” (facilitator).Facilitators  were hired by participants and had to account for their functioning towards participants and not towards the mother-organization. As a consequence, facilitators experienced a high level of discretionary space in. Almost all facilitators in JES were academically trained social workers, who believed in self-management, more so than most participants and peer workers. Facilitators had no formal say in the management of JES and focused on supporting participants and peer workers individually and collectively with self-management. In practice, facilitators struggled to refrain from reproducing the role of group workers in regular programs, especially if participants and peer workers did not share their vision of collective self-management or if participants got stuck in the afore mentioned fyke (trap) of self-management. When participants and peer workers were struggling with conflicts or were complaining to facilitators, facilitators had to remind themselves, participants and peer workers that they were not in a position to intervene.Following from our exploration of the meaning of JES and the similarities and differences between JES and regular programs from the perspectives of stakeholders, our next step was to explore to what extend processes of structuration are described by members of stakeholder groups. Different views on the desirability of structuration were found, as were several structurations of the values of self-management.“JES needs to move ahead. […] That they are still talking about that cleaning is a problem, groceries are a problem [… .] we have been talking about that for years [… .] Rules that were made in the past, are now being changed. Is that better?” (participant).“There used to be a group who were there for a long time. And they had their way of self-management. But the moment people start to move out, other people come, comes a whole different, new society, with ever different participants” (participant).Whether JES needed more or less structure was subject to heavy debate among those involved. Structuration is seen as both positive (not reinventing the wheel) and negative (less opportunity for influence for new participants).“I see a lot of people abusing that freedom. [… .] If you don’t want that, than you should intervene hard, but we don’t want that, because we like to keep our freedom” (participant).Rules and procedures were constantly discussed and changed, to the dismay of some of the participants and peer workers but to the benefit of those who wanted to have influence on the program. The level of structure fluctuated over time, enabled by the fluid setup of JES. Some peer workers and participants emphasized the support some of the participants needed to get their affairs in order and the importance of rules that allowed participants to focus on their own life. Others preferred less structure, either because they felt that too much structure was a reproduction of regular programs and/or because too much structure limited the possibility for participants to develop new roles and skills.which can’t be steered” (peer worker), although they also mentioned examples of encouragement and stimulation, for instance by processes of social comparison with and social learning from other participants who are making progress.Participants, peer workers and facilitators referred to an unpredictable and unique trajectory that each participants goes through, “We found several examples of how self-management was embodied in the structure, including a key all participants had and a set Monday meeting with actual influence on all aspects of JES, from household to hiring and redecorating. Rituals within JES were far less codified compared to for instance self-help groups , in combination with a vulnerable background that participants shared, caused various tensions, such as an ongoing discussion on rules and enforcement of rules and participants withdrawing from social processes. The description of communication that was given appears to echo the description of strategic interaction, focused on distrust and power, that others described in regular programs Goffman, . In periCompared to Goffman’s  descriptFrom a critical perspective, it could be argued that processes of social control appeared internalized by participants and peer workers, possibly because participants have internalized the need for control from regular programs. Developing structures appeared to be stimulated to some extent by external pressures and an unnatural setting of strangers living together based on a shared vulnerability. JES promotes moderate identity transformation of participants, like regular programs, albeit towards empowerment. Some participants experience identity transformation as positive, while others echo state that identity transformation is unwanted social control. Others respondents and authors argue that empowerment is an acceptable balance between freedom of choice and offering support  and fluctuated with other structures, supporting the argument that participants do influence institutionalization (DiMaggio & Powell,


Understanding the pregnant women’s perception of continuity of team midwifery care is necessary for introducing and implementing this model of midwife-led care in the Iranian maternity services. This qualitative study aims to explore women’s perception of continuity of team midwifery care in Iran.This research is a qualitative study conducted in Iran to explore women’s perception of continuity of team midwifery care during pregnancy, birth and postpartum from October 2019 to August 2020. Fifteen semi-structured interviews were conducted with women individually in private midwifery clinic through a purposive sampling method. Interviews were digitally recorded and transcribed verbatim in Persian and analyzed using conventional content analysis.From the data analysis, two themes, four main categories, and nine subcategories emerged. The themes were “Maternal empowerment” and “Mother’s satisfaction during the transition from pregnancy to motherhood”. The first theme included two categories of improving self-efficacy during antenatal education classes and the effective midwife-mother interaction. The second theme composed of two categories of satisfaction with the process of pregnancy, childbirth and postpartum as well as satisfaction with motherhood.Findings of this qualitative study highlight the effectiveness of continuity of team midwifery model of care for promoting empowerment and satisfaction in women during pregnancy, birth and postpartum. The results of this study could pave the way for developing, introducing and implementing the midwife-led continuity models of care in Iran.The online version contains supplementary material available at 10.1186/s12884-021-03666-z. The experiences of pregnancy, giving birth and having a baby create lifelong memories for women. The impact of maternity experiences on women can be empowering and lead to feelings of self-worth and self-confidence or may cause negative maternal health outcomes such as postpartum depression and post-traumatic stress disorder , 2. The Research has shown that maternity service standards in Iran, need to be reviewed effectively to implement a high-quality and safe women-centred maternity care service for women and their family . AlthougDuring four decades, midwives have been able to establish private clinics and visit pregnant women as part of their job responsibilities privately . Some ofIt has been proven that continuity of midwifery care is the best model of maternity care for mothers and babies, and this model of care is growing in countries with high standards of living such as New Zealand, Australia, the United Kingdom, and Denmark . The conThe advantages of continuity of midwifery care for improving maternity services is evident. However, regarding medical dominance in the maternity system, more efforts are needed to assess such midwife-led models as the novel models of maternity care in Iran. Since the availability, efficacy and acceptability of different models of care depend on the local context, we performed a large project to check the effect of team midwifery care on the outcome of pregnancy and also a qualitative study on the perception of women about team midwifery care . In thisThe present article is part of a larger mixed-method study that aimed to evaluate the effect of continuity of team midwifery care on pregnancy outcomes in the city of Ahvaz, Iran. The paradigm of this research is pragmatism, which is associated with mixed methods and works most effectively for the research problem . A qualiThe study settings were a private midwifery clinic and two hospitals  in Ahvaz city, Iran. The main reason for choosing these hospitals as study settings was that the two research assistants (midwives) deliver babies in there. The first hospital is a state hospital and the latter is a charitable public hospital which they manage about 3500 and 3000 births per year respectively. Midwifery continuity of care is not offered in these hospitals like other hospitals in Iran, because the prenatal care is provided by other midwives employed in primary health center or private midwifery clinic. Midwives in mentioned hospitals, provide the standard care and work under the supervision of obstetricians.The private midwifery clinic was selected for providing team midwifery model of care. A team of three licensed midwives including two self-employed midwives and one doctoral student in midwifery (SS), provided continuity of care for the research participants throughout pregnancy, birth and the postpartum period. Women’s booking visit with the midwifery team was earlier than 24 weeks of pregnancy. Prenatal care was provided in the private midwifery clinic. The midwives presented in the private midwifery clinic every other day, but the team midwives were 24 h/7d on call. All women gave birth in those aforementioned hospitals assisted by one of the team midwives who was on call at that time and minimum two routine postpartum visits were performed for the mother and babies during the first 6 weeks after birth. The midwifery care plan was in accordance with the national maternity guideline and in case of occurring any complication, participants were referred to an obstetrician for consultation . Also, aEthical approval for this study was granted by the Ethics Committee of Ahvaz Jundishapur University of Medical Sciences (IR.AJUMS.REC.1398.096). Confidentiality of the collected data was ensured, and written informed consent was obtained from all research participants. Also, participants were free to decline participation or withdraw at any stage of the research process. All interviews were recorded with the permission of participants and all the audio files were securely stored in the password-protected computers.In-depth, semi-structured interviews were conducted, digitally recorded and transcribed into the original language (Persian). Interview were recorded using a Sony ICD BX 470 recorder. Data were collected individually via face to face or telephone interviews by the first author. The interviews were carried out in a separate room at private midwifery practice and no one other than the interviewer and participant was present in the room. Due to COVID-19 pandemic and the lockdown in Ahvaz city some of the interviews conducted by phone. During this period of time, when pregnant women encountered a complication, they called team midwives and consulted with them. Women were called by prior arrangement and interviews were recorded by mobile phone call recorder. An interview schedule containing three open-ended questions was used. Participants were asked to explain their perception of care received from the midwifery team during pregnancy, birth and postpartum. The first question was “Would you describe your perception of care received from team midwives during pregnancy?” And then participants were asked about the quality of care they had received during their childbirth and postpartum. Probing questions were asked when more clarifications were needed. The duration of each interview varied from 45 to 60 min. All interviews continued until data saturation reached and no new concept was added. Fifteen primipara women who met the inclusion criteria participated in this research voluntarily. Inclusion criteria were as follows: nulliparity, term singleton delivery, low-risk women who are eligible for receiving maternity care from a midwife, age 18 years or older, ability to provide sufficient information on the subject and willingness to participate in research and sign the informed consent form.Data analysis performed using conventional content analysis method, guided by Graneheim and Ludman in five stages . Also, cAll the interviews were performed and coded initially by the first author, who was fluent in original language (SS). To ensure the credibility of research data, sampling was done until data saturation, appropriate meaning units were selected and participants’ checking was carried out. To strengthen conformability, a detailed description of the research steps was presented to and then confirmed by all co-authors. Dependability was ensured by the authors describing the analysis process. Transferability of the findings was gained as the results were logical for three women who experienced team-midwifery care but did not participate in this study.The findings emerged from the data analysis of the face to face and phone interviews with fifteen primipara women who participated in this research. The average age of the participants was 24 years old. Table Empowerment is a woman’s ability to take the lead in the decision making process about her maternity care through interaction and information sharing with her chosen midwife . This thSelf-efficacy is women’s belief in their ability to perform a task or behaviour . In this“I was very inexperienced; I didn’t know anything at all. As soon as I came here , they informed me about the physiological pregnancy and birth process and what may happen” (Woman 5)“When I came for antenatal classes around 32-34 weeks of my pregnancy, I’m talking about the pain relief classes, you taught me about several pressure points … In case of I may forget those things during the labour and birth, I had written and gave it to my husband. When the pain started, he massaged those points. Especially the one which was on my foot, helped me a lot” (Woman 6)Participants frequently mentioned that they were satisfied with the antenatal classes and explained that they did not have any prior knowledge regarding pregnancy and childbirth as a first-time mother. They asserted that these classes improved their knowledge and skills, and then they transferred this knowledge to their partners.“I didn't expect that childbirth is a very simple task, but with the educational classes and what you taught us, such as exercises, the process became much easier.” (Woman 5)“I didn’t know what to do, whenever I had pain. For example, sometimes I had a stomachache, I didn’t know where to go, I was thinking maybe I should go to hospital. But after participating in these antenatal classes, everything was explained to us. I was doing the same thing that you told us and my pain was really reduced.”(Woman 10)“I was told in those classes … this (labour pain) pain comes and goes. The moment you are pain-free and between pains and you are Okay ...mobilise and do the things you like. It helped me a lot. I mean, I was at home at 4.30 am, and I had severe pain. When the pain wasn’t there, for example, I was walking, filling the hot water bottle, packing my stuff for the hospital stay  and then, when the pain started, I had to sit again. It was so good.”(Woman 8)From the participants’ point of view, antenatal classes empowered them to cope with the new challenges that they faced during the physiological process of pregnancy, birth and postpartum. Additionally, they learned how to manage and deal with labour pain, according to their individual needs and situations.“When I was with my midwife ... Her help, her words were very soothing. She guided me before my pain was started. I was fearful, I was very anxious, but she helped me a lot.” (Woman 4)“I wasn’t tolerant. I couldn’t tolerate this pain at all, could I? Not at all! To bear the pain of having a baby. But I became more patient when I came to these classes.” (Woman 2)“When I attended those classes, they (the team midwives) said … the body changes naturally. It changes during natural birth … When I got this information, my mind got ready and accepted it. So, such a thing is possible. When my mind accepts such a thing, the body naturally accepts it” (Woman 7)The majority of women who participated in this research reported that antenatal classes played a remarkable role in reducing their fear and anxiety. Moreover, these classes helped them to enhance their pain tolerance, change their negative attitude towards birth and demystify their misconceptions about childbirth.This category brings together two subcategories that emerged from the data: Mother’s trust in the midwife and mother’s perceived support from the midwife.“Yea! In one of my blood tests, my haemoglobin was a bit low. She (the midwife) gave me some advice. I did the same. My vitamin D also was low. But the next blood test came back normal. It was good. I could trust her ... trust. She (the midwife) is very experienced, she is very sympathetic.” (Woman 5)Participants said that they followed the advice given by the midwives because they believed that the team midwives were very knowledgable, skilled and experienced as well as very compassionate midwives who they could trust them.“If I want to get pregnant again, I will choose her again (one of the team midwives). She is very friendly and patient. This relationship has a great effect on you to be comfortable with her. She is like your mother, your sister ... you are not afraid of having a problem. You would tell her.” (Woman 1)Some participants claimed that the partnership relationship with the midwife was one of the reasons which they felt relaxed and could express their problems and ask their questions. They considered the team midwives as their professional friends who provided women-centred continuity midwifery care for them:“ … …Her words, her help, were very effective, for example when I was in pain or I had a question, even in the middle of the night, I sent her a text and she replied immediately. It reassured me that I knew I had a midwife who is always there for me, she could help me, she could answer my questions very well, she could take care of me.” (Woman 4)All research participants mentioned that the team midwives were very approachable, accessible and they were always available for them which gave them a feeling of assurance.“When I realized that I’m in labour, I was happy. My mum said: “aren't you scared, love?” I said “no, mom”, I’m happy. The reason that I was happy was the guidance of Mrs. ... (midwife), her support. That I knew someone is with me. Nothing terrible will happen because I’m in safe hands.” (Woman 8)Participants appreciated companionship and support of midwives during the birth process, which led them to feel empowered and safe:This theme included two categories of satisfaction with the process of pregnancy, childbirth and postpartum as well as satisfaction with motherhood.This category involves two subcategories of participants’ satisfaction with pregnancy period and participants’ satisfaction with childbirth and postpartum periods.“On the other hand, I didn’t want to go to ultrasound all the time. They (midwives) could understand a series of issues with an examination and according to their experience. They could understand even the rotation of the baby with the examination. Well, this was much better for me. “(Woman 11)“I even think, I bothered her (midwife) a lot. For example, at the end of the labour, I said: “call my husband and let him sign for me to have a cesarean section.” Then, she said: "No, I’m not a midwife who let you undergo the surgical blade, I don’t allow that, at all.” (Woman 12)This subcategory represents the positive viewpoint of participants about avoiding unnecessary interventions and relying more on experience and knowledge in the process of care by midwives. Some participants appreciated midwives’ efforts to encourage them giving birth normally and avoid caesarian section which is not medically indicated.“I nearly experienced a very good year. I mean, nine months. It takes about a year for my baby to be born and somehow grow. My tolerance was enhanced a lot when I was seeing her (midwife) accompanied me (during labour) patiently.” (Woman 4)Based on participants’ statements, in addition to midwives’ clinical skills, their accompaniment during pregnancy enhanced their inner strength and made this period memorable for them.“They (midwives) give birth themselves. Women usually do like to be examined by someone every minute when they go to the hospital. I didn’t want someone to come every minute, for example, I was embarrassed. They (team midwives) only examined me themselves. It was very good, I was satisfied.” (Woman14)“I told them, the ladies … (midwives) are angels. With their help, I had no pain at all. You would have neither pain nor stress. Having these people, it is very easy to give birth.” (Woman 12)All participants were grateful with giving birth by a known midwife, as they were relaxed and was not anxious. They stated that following a pleasurable physiological birth, they got a new and positive attitude towards labour and recommended it to others because they believed in their care providers and their abilities.“At early pregnancy, I wasn’t worried. But in the end, it was very difficult. Both birth and becoming a mother made me concerned. It is a tough responsibility. I was worried about my studies, my job … that I couldn’t take care of my baby. Most of these issues were my concerns. Mrs ... (midwife) helped me a lot.” (Woman 11)Participants were satisfied with their midwives because they were so promising and helped them to relieve their concerns during the postpartum period:This category comprises of two subcategories of a sense of pride through passing the difficult path of childbirth and more motivation for acceptance of getting pregnant again.A sense of pride through passing the difficult path of childbirth women were pleased with their experience of natural labor, which offered them a great sense of triumph and dignity. Some of them enjoyed having a beautiful feeling of accomplishment, self-confidence and empowerment following giving birth“... (With the birth of the baby) as if putting the world on your chest. Something very big happened, that you could handle. Yes, I always say it is a miracle. Why do they say now it is not a miracle? ... Every time a baby is born, a miracle happens. “(Woman 1)“When my baby was born, the moment of his birth was very beautiful. Something that has not experienced before. One feels that has been born again. A sense of pride and confidence. You are complete. This feeling was so beautiful.” (Woman 4)“(Birth) made me very strong … My self-confidence improved, when I could bear it all night. Birth is a difficult path for every woman.”(Woman 7)“Two months ago, I thought I was pregnant. I mean, I had this stress. But I wasn’t afraid. I said that if I was probably pregnant and wanted to give birth, I would have no problem. I mean, I wasn’t afraid of pregnancy and childbirth. This is because I had a comfortable birth.” (Woman 9)“When I got pregnant, I told my husband “That’s it, I’m done”. After I gave birth, I told him that I want another girl. He asked me “Do you want to get pregnant again?” I told him that yes I do, because of having Mrs ... (midwife), I want to get pregnant again, I want another girl.” (Woman 2)According to statements of some participants, they did not afraid of getting pregnant again, due to experience of a comfortable birth and even one of the women pointed out that following her natural birth, she decided to get pregnant again, because of her amazing midwife.This qualitative research aimed to gain a deeper understanding of women’s perception of continuity of team midwifery care during pregnancy, childbirth and postpartum in Iran. The women’s perceptions were categorized into two themes: “Maternal empowerment” and “Mother’s satisfaction during the transition from pregnancy to motherhood”.According to the obtained results, antenatal classes improved women’s self-efficiency, which was one of the significant findings of this study as the research. This result aligns with Byrne et al. (2014), who concluded that participants in childbirth education programs had significantly more self-efficacy and positive expectations of their birth .women’s satisfaction with team midwifery model of care in our study [Women in this study regarded self-efficacy as enhanced knowledge and coping ability during pregnancy as well as emotional acceptance of natural birth. Research has shown that childbirth is a broad range of uncertainties especially for new mothers . Particiur study .Moreover, in the present research, women reported the effective midwife-mother interaction in team-midwifery care as they could trust the midwives. Participants noted that they follow the advice that was given by the team midwives due to their skills, knowledge and expertise in midwifery. Our findings are in accordance with the study conducted by Perriman et al.(2018) who indicated that when events did not go as planned, women were following the recommendation that was given by their midwife . Being cThe participants in this study considered the effective midwife-mother interaction in team midwifery care as the mother’s perceived support from the midwife. They were satisfied with the easy and constant access to midwives, which is important for developing a trusting relationship between them and enhancing the probability of having good birth outcomes . Women aWe found that women were satisfied with the team-midwifery care during pregnancy and their reliance on clinical examination and experience instead of unnecessary medical interventions. On the contrary, Hunter et al. (2017) in their thematic analysis of women’s and clinicians’ experiences reported that women regarded medicalized care as the same as normality because of its safety . While MThe current research participants also were satisfied with team-midwifery care during labour and postpartum. Women valued giving birth with a known midwife. One of the reasons was that they got embarrassed to be examined by different care providers, which is in line with the Hassan et al.’s (2012) study . Some woParticipants considered Satisfaction with motherhood as a sense of self-confidence, great success, pride, empowerment and even happening miracle. One of the mothers expressed her feeling of being able to manage labour pains as an accomplishment, which is one aspect of positive birth experience . These sRedshaw et al.2019) suggested that a woman’s experiences of maternity care might have been linked to her future pregnancies and also decision-making about future childbirth 9 suggest.COVID-19) Pandemic and the lockdown in the middle of the collecting data, which we had to interview with nearly half of the participants by telephone. Hence, in addition to the lack of face-to-face communication, their perception of care might have been affected by the pandemic situation. Also, sampling in a private midwifery office was the second limitation of the present study, as we could not have the optimal maximum variety in sampling.We are aware that our study may have two limitations. One of the limitations is related to the (Understanding the women’s perception of continuity of team midwifery care is necessary for developing, introducing and implementing this model of midwife-led care in Iran. Therefore, this qualitative study conducted to highlight the significance of women-midwife relationship during pregnancy, birth and postpartum which is ignored by the dominant fragmented maternity care system. Findings of this study emphasize the effectiveness of continuity of team midwifery model of care for promoting empowerment and satisfaction in women during pregnancy, birth and postpartum.The authors would like to thank all the women who participated in this study.Additional file 1.


The shortened version of the Western Ontario Rotator Cuff Index (Short-WORC) is a patient reported outcome measure that evaluates quality of life (QoL) of patients with rotator cuff pathology. However, formal content validation of the full or Short-WORC has not been reported. This study aims to understand how 1) people interpret and calibrate responses to items on the Short-WORC and 2) compensatory strategies that might enhance function and thereby affect responses.n = 10), clinicians (n = 6) and measurement researchers (n = 10) were interviewed using a talk aloud structured interview that evaluated each of the 7 items of the Short-WORC. All interviews were recorded and transcribed verbatim by one researcher (R.F). Analysis was done through an open coding scheme using a previously established framework.This study uses cognitive interviewing, a qualitative methodology that focuses on the interpretation of questionnaire items. Patients with rotator cuff disorders , compensating with the unaffected arm (88%) and lifting heavy objects (92%) were the most relevant to participants. Participants calibrated their scores on the items of sleeping and styling (19%) the most. Perspective modifiers of gender, influenced the calibrations of items of styling your hair (30%) and dressing or undressing (19%). Compensatory strategies of task-re allocation and using assistive devices/resources were frequently mentioned by participants. Overall, participants had minor comprehension issues, but found the 7- items of the Short-WORC to be relevant to QoL.Therefore, the findings demonstrate that the Short-WORC is not cognitively complex, but varies with patient perspectives. Overall, the Short-WORC provides evidence of demonstrating strong content validity when used for rotator cuff disorder patients. Rotator cuff disorders (RCDs) include a spectrum of pathologies that can lead to shoulder pain, impairment and activity limitation . While tThe construct of QoL is critical for defining optimal treatments, as the goal of surgery and rehabilitation is to improve the QoL in patients , 4. The A fundamental aspect of validation is understanding the content validity of a questionnaire . ContentThis study used a descriptive qualitative approach based on the principles of cognitive interviewing to explore participants’ interpretations of specific words, constructs (variables that cannot be measured directly but are informed through other variables that are measurable) and phrases on the Short-WORC. This enables an understanding of how participants calibrate options when responding to the measure , 15. CogInterviews were conducted in a small private room at the Hand and Upper Limb Clinical (HULC) Research Laboratory, London, Canada. Patient and healthcare provider participants were recruited from St. Joseph’s Health Care London and researchers were recruited from Western University . Participants who met the inclusion criteria were invited to participate in the study; greater than 18 years of age, can speak and read English and did not have another mental or physical aliment that could contraindicate the shoulder injury or not allow them to be able to participate in the interview process. This questionnaire was introduced into standard routine care of core outcome measures for shoulders at HULC. Patients only answered questions about the Short-WORC and no other PRO.n = 10), healthcare providers (n = 6), and measurement researchers (n = 10) were recruited. Patients who had received some treatment  for their rotator cuff disorder at HULC (n = 6) and patients who had been diagnosed at HULC but not received treatment for their shoulder (n = 4) were recruited to achieve a diversity of participant experiences. Patients had a variety of rotator cuff disorders. Diagnoses ranged from under a year (n = 4) for patients who have not received treatment, and from 1 year to 5 years of diagnosis (n = 6) for patients who had received treatment. Healthcare providers were a mix of both sexes and occupations included: nurses, surgeons, physiotherapists and occupational therapists practicing in London, Ontario. Measurement researchers included trainees of both sexes in the faculty of Health and Rehabilitation Sciences at Western University. Trainees have had exposure to questionnaire design and evaluating psychometric properties. Participation of both men and women of varying age groups allowed for a diversity of experiences. Recruitment for interviews stopped when saturation of the responses was achieved [Through purposeful sampling, we aimed to include perspectives of healthcare providers and recipients . Therefoachieved . The stuParticipants provided written informed consent prior to the interview. Interviews were conducted in English by one researcher (RF) and lasted between 40 and 60 min. All interviews were recorded on an encrypted tape recorder, and then transcribed verbatim.The interview structure was informed by previously published work , 17 and Descriptive statistics  were collected and are presented in Table Data analysis resulted in the categorization of 6 themes that describe the issues that participants had when interpreting items. This is further described and illustrated by participants’ quotes, as demonstrated in Table Overall findings demonstrate that individuals interpreted items based on their personal situation, personality traits, biology, work roles and/or environmental factors , which wn = 26) were asked to read the instructions out loud, some comprehension (C) issues arose. Specifically, there was misinterpretation around some of the important words in the instructions. For example, when asked to define the word “past week”, some participants confused this with “average week”.“Okay so here I have to answer and think about my lifestyle and what I do on an average day in the week, and how much my shoulder has been kinda affecting or altering those activities.” – Measurement Researcher #1, femaleSome participants also struggled with the interpretation of the word “lifestyle”. When asked to define, the majority of participants associated lifestyle with only activities of daily living.“Lifestyle is my activities during the day. Would the term activities of daily living be better suited instead of lifestyle, is this what you are asking?” - Clinician #4, femaleThe Short-WORC focuses on two different domains which have unique sets of instructions. When participants  considered this item to be relevant to their lifestyle, however, some participants in the patient group suggested that it was only relevant if they slept on the injured shoulder.“I always sleep on my left side so my right shoulder (injured) is fine at night.”- Patient #8, femaleAdditionally, some participants in the patient group (19%) described compensator strategies that allowed them to sleep better at night. Participants in the patient groups further discussed themes of intense shoulder pain, which translated to modifications of their sleeping position to comfortably rest.Since the surgery was on my left shoulder, my left shoulder was out, and so I mostly slept on my back.” – patient #4, male.“Comprehension of this item was generally clear to participants in all three groups. When asked to define the term “styling your hair”, phrases of “grooming, blow drying, combing, brushing and using styling products” arose amongst all three groups. Findings demonstrate this item to be relevant to QoL with the majority of participants , however, the theme of perspective modifiers heavily influenced the interpretation.Relevance was a gendered issue with this item. Men in the patient group more often found this item to be irrelevant to their QoL as they had short hair or were bald (30%).“I’m bald, I don’t need to style my hair!” – Patient #5, male.Furthermore, some participants in the group of patients who had not received treatment (19%), used the item of sleeping, as a reference point to calibrate their response to the item of styling your hair. Additionally, female participants in the patient group and measurement researcher group identified that styling their hair was critical to their QoL, and so needed to compensate with the uninjured arm, seek assistance or allot more time in their day for styling.If I were to injure my shoulder, I would still style my hair …I would get someone (roommate) to just help me out if I needed a specific style.”- Measurement Researcher #1, female.“In general, definitions of “dressing or undressing” were interpreted as “putting on clothes, removing clothes, and getting ready”, indicating no comprehension issues with the participant group of patients. Findings further indicated that the patient participants (70%) strongly endorsed the relevance of this item to their QoL. Additionally, some participants in the patient group and measurement researcher group (30%) calibrated their response to this item, based on their scores for the items of sleeping and styling their hair.I would say my answer would be the same as styling my hair…if I chose 5 or 6 in question 2, then I would choose the same answer for question 3.” – Measurement Researcher #2, male“Furthermore, participants in the patient group identified the importance of completing this task and the need to compensate to complete it. Strategies for compensation included: requiring assistance from a device or family member, increasing the allotted time for changing of clothes, or changing the types of clothing worn in order to decrease shoulder movement.“I can’t reach my back to put on my bra…that’s why my husband helps me out.” – Patient #6, female.Findings indicated some comprehension issues with this item, as participants would interchange the words “lifestyle” and “daily activities” often. When asked to define “daily activities”, terms such as: “chores, work, school, and living style” frequently arose amongst all participant groups.Yeah my daily activities are defined by my work and hobbies. My life is my job, family and other activities I do.” – Patient #5, female.“In contrast, definitions of “about the house or the yard” resulted in phrases of: “chores, eating, cleaning, cooking, gardening and yard /outdoors work”. Only one female participant in the clinician group initially misinterpreted the meaning of about the house or yard, and defined it as occupational labour that involves working outdoors.“This means work outside of the house like employment that you get paid for or yard work. This is both inside or outside the house and external jobs…that’s what I think”- Clinician #6, FemaleOverall, all participants in all groups (80%) identified this item to be relevant to their overall quality of life, but some (12%) were concerned with the phrasing of “work in the yard”. Due to patient participants’ living conditions, some did not require the need to do yard work, i.e. living in an apartment or having designated help prior to the injury.“No, I do not do any yard work, my husband always does that.” – Patient #8, female.Additionally, some compensatory strategies were mentioned from patients such as: seeking assistance from someone else to do their daily activities or modifying the time period or frequency of activities they participated in.Overall, this item received positive feedback from all participants in all groups (90%), as many identified this item to be a critical component of recovery. Some female participants in the patient group (10%) identified that they did not need to do much overhead reaching and therefore, found this item less important to their quality of life.I have an office job, I don’t need to raise my arms much.” – Patient #8, female.“Definitions of “working above the shoulder” included phrases such as: “overhead reaching, lifting above my head and raising my arms”, indicating comprehension was generally good for this item. Participants in the patient group frequently mentioned compensating strategies in order to continue to work above shoulder level, such as: modifying the placement of items for easier access or seeking assistance when needing to reach above shoulder level.“I try to use my left hand a lot more to help out and then I keep things within reach. The shelves are much lower in my house and if something is too high for me I use a step ladder.” – Patient #10, female.Definitions of “compensate” led to phrases such as: “using my not injured shoulder and using my healthy shoulder more”, indicating no comprehension issues amongst participants. Furthermore, this item was identified as a critical component for QoL by participants in all groups (88%).“I use my left hand a lot, which is much harder since I am very right-hand dominant.” – patient #6, female.In contrast, some female participants in the patient group (12%) indicated that compensating was less relevant, as their injury was on their non-dominant arm.“I am right handed; my injury was on my left shoulder…do I compensate? Not frequently”.– Patient #3, female.When asked to define “heavy objects”, participants all groups stated words such as: “weight, large and using force”, indicating the item was well understood. Overall, this item resulted in a mix of responses depending on what stage of recovery the participant was in. Participants in the patient group who were further along their recovery scored this item lower, while participants who were in the early stages of the injury scored it higher. Nevertheless, the majority of participants (92%) identified this item to be important to QoL. While evident that participants in the patient group understood this item, some (12%) participate in a variety of tasks below shoulder level and therefore, were unsure which tasks to calibrate their score to.“I do some yard work and cleaning that can be difficult to bend and pick up things from time to time...I think something in the middle?”- Patient, #3, femaleAdditionally, some participants in the patient group discussed compensatory strategies such as re-allocating the task to someone else in order to feel less discomfort.“Now with the snow coming, I will have to shovel myself since the weather is bad and I will have to find help.”- Patient #7, female.Overall, the content validity of the Short-WORC was supported within this population, as most respondents found the items on the Short-WORC to be clear and relevant to their functioning. However, the item of styling your hair was not relevant to a minority of the study sample and had a gender-bias being less relevant to men. Furthermore, it was evident that many patients had developed compensatory strategies, as this was mediated in the difficulty reported. Overall, the items received positive feedback, there was no struggle with the recall period, and most of the items were correctly interpreted.COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN), content validity is one of the most important criterion for evaluating a PROs, and should be assessed by both patients and professionals [According to the ssionals , 21. In ssionals , COSMIN ssionals , 22, 23.ssionals . Findingssionals , 17, 25.Another component of cognitive interviewing is the evaluation of participants’ recall period. The recall period, assesses participants’ responses based on the strategies they use when responding to an item . The resIn addition, another facet of construct validation is item relevancy. Items must be relevant to the intended population and construct being assessed . While rstyling your hair to be not relevant to their lifestyle, the majority of participants did. Changing existing measures is a major undertaking since it creates confusion and makes it less possible to compare data across time. Therefore, major issues should be present to warrant these changes. According to COSMIN guidelines [We conclude that the Short-WORC has shown to support content validation, based on the evidence presented in this study, and within the intended population. Findings demonstrate that all items were relevant to the majority of participants when evaluating their QoL, and the issues were relatively minor. A minority of participants found the item of idelines , 21, 22,idelines , 8.A secondary purpose of this study was to explore the compensatory strategies that influence the participants calibrate their responses. Findings demonstrated strategies of modifying activity levels, lowering personal expectations or re-allocating tasks in order to avoid stress to the shoulder. Understanding the compensatory strategies for RCDs, provide further insight into why participants with similar impairments might report different levels of functional ability , 26. FurOverall, limitations in this study included the use of a population that was predominately middle-class Caucasian. However, the demographic region from where this study was conducted is predominately of Caucasian descent , 28. TheIn conclusion, the evidence in this study demonstrates that there is no need for change to the items of the Short-WORC, as they tend to be understood by patients with rotator cuff disorders. The Short-WORC reflects the principles of comprehension, relevance and recall, supporting aspects of content validation in the intended population. Overall, the items on the Short-WORC are able to capture aspects of activity limitation, and should be used with a numerical scale from 0 to 10. Future studies should assess other psychometric properties such as reliability, validity and responsiveness prospectively.


These are traditionally implemented imperatively, using shared mutable state and callbacks. This is efficient, but is also difficult to reason about and error prone. Functional Reactive Programming (FRP) provides an elegant alternative which allows GUIs to be designed in a declarative fashion. However, most FRP languages are synchronous and continually check for new data. This means that an FRP-style GUI will “wake up” on each program cycle. This is problematic for applications like text editors and browsers, where often nothing happens for extended periods of time, and we want the implementation to sleep until new data arrives. In this paper, we present an


Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is common in children and adolescents; however, little is known about how we should define recovery. This study aims to explore perceptions of recovery held by paediatric patients with CFS/ME and their parents.Children with CFS/ME and their parents were recruited through a single specialist paediatric CFS/ME service. Data were collected through semistructured interviews with children and parents. The interview questions explored how participants would know if they/their child had recovered from CFS/ME. Thematic analysis was used to identify patterns within the data.Twenty-one children with CFS/ME, twenty mothers and two fathers were interviewed. Some children found it hard to define recovery as the illness had become a ‘new normal’. Others thought recovery would indicate returning to pre-morbid levels of activity or achieving the same activity level as peers . Increased flexibility in routines and the absence of payback after activities were important. The interviews highlighted the concept of recovery as highly individual with wide variation in symptoms experienced, type and level of activity that would signify recovery. Parents describe how changes in mood and motivation would signify their child’s recovery, but children did not reflect on this.Some parents and children struggle to define what would constitute complete recovery. However, signs of recovery were more easily identifiable. Definitions of recovery went far beyond symptom reduction and were focused towards rebuilding lives. Little is known about how to define recovery in the paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) population.Children and their parents struggle to define what would constitute a complete recovery as CFS/ME has become a ‘new normal’.There is wide variation in definitions of recovery between individuals.Recovery definitions go beyond symptom reduction and focus on returning to or achieving the same activity as peers, without payback and with flexibility in routine.Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is common in children and adolescents, with a prevalence of 0.6%–2.4%.It is difficult to define recovery in CFS/ME as the condition affects multiple dimensions including symptoms, physical activity, social participation (including school) and emotional well-being.We recruited participants and their parents/carers to a qualitative study with three research questions: (1) How should we define recovery? (this paper) (2) Which outcomes are important for children with CFS/ME and their parents? (paper under review) (3) What is the minimally clinically important difference in fatigue and SF-36 physical function scale?Interviews were used as it was not possible to recruit to focus groups as patients were from a wide geographical area requiring long-distance travel placing a possible burden on children with CFS/ME who experience fatigue and payback. Individual interviews allow more in-depth exploration and interviewing has been used successfully from preschool to high school children with a range of conditions  between December 2014 and February 2015. Participants were offered interviews at home or on hospital premises to reduce travel.A flexible open-ended interview guide was developed with input from a young person’s advisory group within a secondary school  to ensure the questions were comprehensible and clear to school-aged children. The topic guide included questions on recovery, relevant outcomes to measure and the amount of change considered important . This section included questions on how participants knew when they were feeling worse, better and how they would know if they had recovered .10.1136/bmjpo-2019-000525.supp1Supplementary dataInterviews continued until data saturation was achieved.All interviews were recorded on an encrypted digital audio recorder and transcribed verbatim. Transcripts were checked for accuracy, anonymised and uploaded to NVIVO V.10The first three interview transcripts were reviewed to monitor the proficiency of the interviewers  in following the topic guide, picking up on cues and avoiding leading questions.A young person’s advisory group comprising secondary school children was involved in the development of the interview topic guide during the design stages of this study.Twenty-one children with CFS/ME were interviewed, 16 (76%) were female and 5 (24%) were male, mean age was 14.4 years and ages ranged from 12 to 17 years. Seventeen (81%) children had mild CFS/ME and four (19%) had moderate CFS/ME. Twenty mothers and two fathers were interviewed. Most children and parents were interviewed separately, but in 4/21 interviews a parent was present in the room during the child’s interview. Five families who had initially expressed interest in participating when being contacted by the researcher did not participate (two were too busy and three children were too ill).Some children found it difficult to describe how they would know if they had recovered. Living with the condition had become a ‘new normal’ for them and as they had had CFS/ME for so long, children and their parents could not imagine recovery. Due to the fluctuating nature of the illness, one older child felt that even if she had recovered she would worry about relapsing:I don’t really think I would know. I think like now it’s constantly at the back of mind like whether or not like it will knock me again… (Child-age-17)Parents and children both had a tendency to report signs of improvement rather than signs of complete recovery. Some children, but more parents, stated that they would have no difficulty in knowing when they/their child had recovered as they would be ‘back-to-normal’ engaging in pre-morbid levels of functioning or the same activity as their peers All children reported that recovery would be indicated by a return to activities that were particularly important to them: socialising with friends, attending school/college regularly, and both physical “more swimming and go to the gym” and mental activities “I think I’d just have a bit better memory” (Child-age-15). Often, children described school attendance as important for social not educational reasons. The same categories were also reported as important indicators of recovery by parents.Probably school, I’d say—‘cause I think, if I get back into school then I can like, get in touch with more people. (Child-age-13)Being able to return to activities but do them for longer was important ‘walking, erm, walk around for a long amount of time, erm, stand up for a long amount of time’. (Child-age-12)There was wide variation in types of activities that children and parents described as indicating recovery. For children, these activities included cooking, playing instruments, singing and creating artwork. The types of activities children referred to were relevant for their age. For example, children 16–17 years old talked about wanting to be able to be more independent and ‘walk to town’, whereas younger children talked about ‘sleepovers’ and playing with friends, ‘run around and play a lot’.… and having more independence in that sense. Like most people my age will go out to the shops, or just walk around aimlessly, that seems to be popular, but like (laughs) I wish I could do that like. (Child-age-16)Erm, I miss my sports. Erm, ju- have, have sleepovers, erm, with my friends. (Child-age-12)For parents, these included activities with the family, travel, holidays and dog-walks. For one family, both the parent and child described increased mobility to be the most significant indicator of recovery as the child was reliant on a wheelchair.… knows what she wants to do, if she could do it she would, and her main aim is now to probably try and get round the shops without her wheelchair… (Parent)In contrast, other parents described much higher levels of activity to signify recovery:… on the days when gymnastics was on, she exercised every single day, and that’s how I know when I think when she’s better it’s when she starts physical activity again. (Parent)The idea that recovery is highly individualised was also evident in the descriptions of symptoms children could tolerate as part of their recovery. Some parents and children stated that no symptoms would be acceptable in recovery. However, some children felt that they would be able to consider themselves recovered even if they still had some symptoms. Children had different views over whether tiredness was bearable or not and which symptoms were tolerable.I’d be able to live with my headaches. (Child-age-14)… the headaches because they, erm, they just stop her being able to think… (Parent)As well as returning to pre-morbid functioning, children and parents felt that increasing activities should not result in payback (the increase in symptoms following activity) in order for them to be considered recovered.I think I’d know if like, I went out and did something, I didn’t get payback for it, I think that one, I’d know that I was like really starting to recover. (Child-age-13)Older children talked about how they had become used to planning their activity in a way that facilitated pacing and reduced payback. They felt that life had become regimented and that they were unable to spontaneously choose to do an activity/continue without a break. The absence of this rigidity of routine was an important indicator of recovery.… like won’t do as much during the day so that then I can go out in the evening. Yeah, I think that’s like that what I mean by like planning, it’s just so I can kind of plan my other activities like accordingly I suppose. (Child-age-17)You’d know when she’s recovered because she’d be back to normal, because she’d be able to do things, and not just do them but do them without thinking about how much energy she was using. (Parent)For some parents and children, recovery also incorporated the idea that they would be able to have more flexibility in their sleep routines, without experiencing payback. In contrast, some parents felt that the monitoring of activity would be acceptable in recovery to help limit tiredness.Parents expressed that recovery would be indicated by a change in their child’s mood. For some, this would be a reduction in anxiety, and for others, it would be increased positive mood and more engagement with others:Well if she was completely better she would be lively again, bubbly again, joking and laughing again, singing again, but all the time, that’s how she would be. (Parent)Often, parents described that their children would be more motivated when they had recovered. This position was not reflected in the responses of children who often appeared motivated but cautious and limited by their symptoms.So if he was better you’d think he'd just be motivated to get up and be physically able. (Parent)Some parents recognised that changes in personality and preference in activities in their children may be due to factors other than CFS/ME.Yeah, she’s hit puberty as well so, you know, I think a lot of the sort of withdrawing kind of is a teenage thing as well, like wanting to be on her own. (Parent)This is the first paper to explore what children with CFS/ME feel about recovery. There is a struggle to define what would constitute complete recovery as CFS/ME has become a ‘new normal’. Previous levels of activity prior to becoming ill or keeping up with peers were key markers. Descriptions of recovery went far beyond symptom reduction and focused on rebuilding lives which incorporated valued activities in multiple areas of life . The ability to be flexible and spontaneous without suffering payback was an important theme. However, the concept of recovery was highly individual; there was heterogeneity in the activities children wanted to return to as well as the extent to which different symptoms would be acceptable in recovery. There are differences between child and parent definitions of recovery in CFS/ME, particularly surrounding the role of mood.This is a large qualitative study including children n=21) and parents (n=22) which reached data saturation. We considered we had reached data saturation when no new themes arose from the data. and pareChildren and parents in this study struggled to define recovery from CFS/ME. This is consistent with the recovery literature in adults with CFS/ME.Parents and children varied in their criteria for recovery, corresponding with the variety of definitions used in the literature.This study identified key areas of life in which recovery would be recognisable . The same areas have been identified in previous research into the development of a patient-reported outcome measure (PROM) for use in this population.This research highlights the individuality of defining recovery in children with CFS/ME. This suggests that it is vital to involve children in developing any new PROM for paediatric CFS/ME.