This study examines the hypothesis that social capital can be a foundation for community disaster resilience with an analysis of empirical findings from the August 2018 earthquake recovery on Gili Trawangan, Indonesia, a globally known coastal tourism destination. Positive links between community social capital and community disaster resilience are hypothesized, but the extent to which an iterative and interdependent relationship is co-shaping both is less understood. Social capital can enable collective action, providing self-organized social, psychological, financial and material resources following a disaster, that may otherwise need to be provided externally. In turn, disasters create collective action problems where collective response and recovery process are needed, creating an institutional space where the degree of usefulness, meaning and function of social capital can be shaped, recognized and drawn upon, often where external aid is insufficient. These relationships can be observed following disasters, because individuals and communities are often linked through emotive and meaningful sequences of common experiences, actions and activities. Findings descriptively detail Gili Trawangan’s response and recovery process through the events and activities that occurred, and are then theoretically analyzed with a social capital framework including bonding (within group), bridging (between group) and linking  ties. Three conclusions can be summarized. (1) Community social capital and disaster resilience are iteratively co-shaped through collective experiences, actions and activities. (2) Understanding context is critical for understanding if and to what degree this relationship exists. (3) The mechanism through which social capital enhances resilience is that it can enable collective action that can lead to the provision of needed aid and services.The online version of this article (10.1007/s11625-020-00854-2) contains supplementary material, which is available to authorized users. October 2018—Gili Trawangan, Indonesia. Stepping off the boat, the often chaotic but vibrant tourism island appeared, surprisingly, as it had during previous visits in April 2017 and October 2015. Less than 90 days earlier, the island endured four severe earthquakesDisaster studies Lindell  has incrDisaster preparedness, and what is needed for long-term post-disaster recovery, is almost exclusively framed by governments as a need for material capital, financial aid and physical infrastructure needs  Lin . Putnam Nonetheless, social capital is a multidimensional concept, and numerous frameworks have helped define its constituent components to be measured. Szreter and Woolcock  in suppoSocial capital theory suggests that increased social capital will lead to increased community resilience to disasters. The driving mechanism is hypothesized to be collective action, where increased cooperative activities that prioritize group level interests over individual interests, better enables a return to the rhythms of daily life through the provisions of needed social and economic services Mayunga . In pracThis research is rooted in an interdisciplinary sustainability science perspective  of the three Gili Islands off Lombok, Indonesia , along with Gili Indah Dive Association (GIDA)  to maintain safety standards and cooperation. An economic price agreement for diving as well as fundraising mechanisms for waste management are also ongoing efforts , young SCUBA dive professionals and resident locals combine with international tourists. However, the island’s popularity has increased the pace and scale of governance challenges, requiring continuous adaptation and collective action. An environmental non-governmental organization (NGO) was self-organized by the SCUBA industry, the Gili EcoTrust , using both open-ended and semi-structured interview questions   groups and networks, (2) trust and solidarity, (3) collective action and cooperation, (4) information and communication, (5) social cohesion and inclusion, and (6) empowerment and political action (Jones and Woolcock n = 22) . This survey generated descriptive data on each SCUBA center as well as Likert responses to questions on perceptions of how the earthquake affected cooperation and tourism to triangulate with qualitative data. A second survey was conducted on a non-stratified random sample of tourists who had been SCUBA diving on the Gili Islands during their current vacation (n = 389) regarding perceptions of travel and safety related to the earthquake. Tourists were sampled in the harbor area before leaving the island, from each of the eleven boat companies randomly on different days and times.Two quantitative surveys were conducted between November 2018 and January 2019. The first survey purposively sampled the entire population of SCUBA business owners or managers on Gili Trawangan , many fled towards the island’s only hill with fears of a tsunami, while others made their way to the eastern harbor, where a majority of the businesses and people are usually located. The island’s typical ~ 10,000 tourists during a high season week was substantially lower (less than 5000), due to high seas blocking public speed boat traffic from Bali for 2 weeks prior. This also blocked aid response and evacuations, forcing evacuations through Lombok. Mainland North Lombok faced far more devastation, the Indonesian Ministry of Foreign Affairs reported 556 deaths, more than 1000 injured and over 417,000 internally displaced people.2Numerous response and recovery processes occurred following the earthquake, chronologically outlined below. Event descriptions Sects. , 3.3 Ta. SectionThose injured and requiring immediate medical attention became first priority, and within the first hour, 100 s gathered in the harbor area with dozens seeking first aid and critical care. A long-term SCUBA business owner stated, “the response after the earthquake made it seem like we had a plan, even though we didn't” (FSB). Many intuitively provided reactive assistance and gathered in groups near one of the main social hubs of the island, one of the largest and most centrally located SCUBA centers with a high degree of social connectivity . An impromptu logbook describing the patients, marking each with a number on their forehead, their injuries, vital signs and medications or care given was organized Fig. . Lounge Away from the eastern harbor area, 100 s spent the night on the island’s only hill fearing a tsunami Fig. , includiFindings suggest that the pre-existing social capital (primarily in reference to bonding ties among FSB and FB) created a mentality of collective action and agency in the island’s community. This enabled ‘social preparedness’, making the immediate response and later rebuilding efforts more resilient. Although “everyone reacts differently” (FSB), the island’s history of self-organization played a role in how the community responded.The morning after, private boats from SCUBA centers and public boats began transporting the injured, dead and local Indonesian staff (numerous interviewees estimated ~ 90% of Indonesian staff on Gili Trawangan live on Lombok), back to Lombok for evacuation. Due to halted public boat services from high seas, boats leaving the island were mostly self-organized by individual businesses, causing a general rush of tourists to the beaches, promptly trying to leave. “Everyone was trying to get off the island…but those who were helping the relief effort created a human chain from the harbor area to the boats, to block tourists and get the injured and dead off the island first”, (FSB). It was mentioned that some tourists had the mentality that they were more important than locals in terms of who should get off the island first, although it was clear that locals need to get back to their families in need on Lombok, and all tourists were simply on vacation in no immediate danger. Many foreign residents warned against immediate evacuation, as the island was likely the safest place to be if you cannot get to Bali. Numerous accounts of looting were reported, done by both foreign tourists and local Indonesians, especially alcohol and other goods from small shops, although many businesses were giving food and drinks away for free.During the first 2 days, most local residents assessed household and business damage, also helping friends and staff. Many attempted to make generators, food, accommodations and water available for free. Rumors of looting and assault were strongly influential in decisions to leave the island or not, and although one or two isolated incidents occurred, this added overall safety concerns. On day 3, the Indonesian Ministry of Foreign Affairs gave a speech at the eastern harbor to remaining foreigners, saying in the words on one attendee, “if you don’t leave, you’re on your own”, as the last of the public boat services were being offered. Government capacities were being directed to their own citizens on Lombok, and they could not prioritize the safety and needs of foreign residents. Most remaining foreign residents, including most of the women and children, took the warning and were advised to leave on the last boat. However, many chose to stay, stating they “could not leave” (FSB), and that someone needed to look after the businesses and begin the recovery process, as it was clear that it would not get done unless they did it themselves. Summarized by a local SCUBA owner, “spread of information was [minimal] from the government, so this leads to self-organization”, (ISB).An estimated 80–100 people, at least three separate groups of foreign permanent residents (defined by where they stayed and who they interacted with during the closure), and some local Indonesians remained on the island between August 10 and September 1, 2018. The largest of about 30–40 foreign residents all stayed at a dive center in the eastern harbor area (same as triage center), a “good location for seeing what boats and supplies were coming on and off the island”. The second small group, after rumors of looting and assault by locals from Lombok, fortified themselves on the northern part of the island. A third group of hotel owners and managers remained on the island’s northwest, but kept mostly to themselves, along with local resident Indonesians living permanently on Gili Trawangan.The larger eastern harbor group initiated most of the collective actions, assessing and prioritizing tasks to get the island back in order. “We organized people into their different skills to do different tasks around the island. Everyone had different skill sets… [from previous careers],” (FSB). Tasks included clearing debris from roads and beaches, acquiring excavators to be shipped from Lombok, assessing damaged buildings and marking them, clearing out the kitchens and organic waste from all businesses to avoid rot and disease, fixing generators and water towers, assisting the locals who remained on the hill for weeks (still in fear of a tsunami), attending to the horses and cats running loose or set free on the island by those who left  and cooking for everyone Fig. . Daily gAlthough it is clear that “the cooperation of western businesses on issues keeps things together on the island, and working”, (FSB), the collective actions following the earthquake were not without contention. For example, how the animals should be dealt with, because “saving the horses is saving people's  livelihoods” (FSB), similar to reopening businesses for staff employment. “Older shops on the island had to keep together”, (FB), to resolve many of the immediate problems without conflict to get the island functioning again . Motivations to quickly reopen businesses soon after the earthquake received critique. Reopening was a goal for many to support local staff salaries, but criticized as self-interested by some. However, nearly all agreed that rebuilding tourism on Gili Trawangan is the best possible way of supporting Lombok and local Indonesia staff. “Lombok [and Gili Trawangan] will recover faster because of tourism, compared to PaluMotivations for collective action varied, but all with the common themes of agency in being able to contribute to rebuilding community identity. This identity was often referenced to the island’s history and need for cooperation. “When back to opening [for tourism] again, managers were working together to help each other get started again”, (FSB), although their businesses are inherently competing with each other. Similarly, “loyalties were tested after the earthquake. The people who were meant to stay, stayed, the people who were meant to leave, all left immediately after and won’t come back”, (FSB). Since the 1990s, there has been a sentiment that self-sufficiency has led to a proactive sense of agency among many. “If you wait for the government it takes too long”, (LIL), referring to the necessity for quick recovery processes.“Gili [Trawangan] is a small island with a big network”, stated by the owner of a global SCUBA certification organization operating in Indonesia for more than 20 years. The majority of foreign permanent residents who did not stay went to Bali. Many self-organized into groups to gather donations for disaster aid supplies. Bali groups were also self-organized by individuals taking informal leadership roles . This include setting up GoFundMe pages  using social media networks to reach tourists who have visited the Gili Islands from around the world to bring global attention to the relief cause. They developed the social media hashtags #LombokStrong and #GiliStrong, and many made t-shirts to support the relief and rebuilding efforts. More than 15 SCUBA businesses raised thousands to tens-of-thousands of dollars (USD) each to purchase food, water, blankets, temporary shelters, clothing, medical and other supplies in Bali for shipment to villages of local staff in North Lombok. Work by those on Bali mirrored a relief organization, but it popped-up in a matter of days, explained a foreign SCUBA professional, “[anonymous] helped to organize the skills that we all had. He had everyone write down the skills that they have from previous experience. Then, he stayed up all night sorting people into groups, into teams, to coordinate a relief effort…each group/team had an objective. Social media team did a really good job at contacting the international news organizations. We had people from all the different countries of the foreigners who were there, doing interviews and the countries of major tourism visitors. They did a great job. This helped to get more donations as well. [The] cultural diversity of the tourists and of the staff working here in Gilis helped the relief effort”, (FSB).Donations were aggregated and used to purchase aid supplies, and shipped to Lombok in large containers. “The relief effort was totally self-organized, organized with the police in Bali. They used a government/police boat to transport the supplies to Lombok”, (FSB). Knowledge of what was needed and where supplies would be most useful was organized through connections with existing non-governmental organizations on Lombok affiliated with Gili Trawangan businesses, such as the Pituq Community Foundation. Tourism provided a global network of financial resources. “The international nature of tourists, the high international turnover of Gili [Trawangan] helped to raise money, and made the relief effort faster for this reason because they could get needed supplies to North Lombok and then get back [local staff living on Lombok] to Gili to start the economy again”, (FSB).One challenge mentioned by numerous interviewees, emphasizing the need for and usefulness of self-organized supply chains and aid relief, was corruption issues in the delivery of government aid through traditional supply chains. Foreign or government aid could easily be rerouted to certain areas of political or personal interest, to leverage economic or political gains for individuals with power positions along the supply chain. This was reported in Lombok, that a substantial amount of aid supplies were diverted from where they were needed most, stagnating the recovery efforts, making the self-organized and community-based collective action even more impactful as a means of building local resilience.The social networks of Gili Trawangan extend beyond the island. For example, one of the world’s largest SCUBA certification agencies agreed to donate all SCUBA certification profits coming from the island for 3 months. Each SCUBA center could decide where the donations would go, due to “trusted relationships” (FSB) and personal connections with Gili Trawangan’s SCUBA businesses. The Gili Islands provide “approximately 30–34% of the SCUBA certifications in Indonesia”, (FSB). Similarly, a public fast boat company that is informally ‘in the social network’ delivered supplies during the closure at no cost. Similarly, to clear debris “[an Indonesian business owner] shipped two diggers directly to Gili [Trawangan] after the earthquake because of connections to government in Lombok”, (LIL).For many local Indonesians, the Gili Islands are a “lifeline”, (LIL), but the relationship is interdependent. Businesses would not be able to operate without local labor, either economically or legally.It is evident that collective actions allowed Gili Trawangan to officially open for tourism on September 1st, 2018. Getting back to a new ‘life on the island’ was recognized as a long-term process, but sentiments of interviewees reflect that it will be positive. Interviewees reflected on the substantial tragedy, but noted many positives, such that “everybody realized that Gili [Trawangan] is one community after the earthquakes”, (NGO) and that “we are all in the same boat”. In reflection on the island self-organized the recovery, one respondent commented, “I don’t think that the community will forget that we helped each other”, and that you can “go through disaster but come out stronger afterwards”, (FSB). A common sentiment was that “before the earthquake, we knew each other, but now it's more connected”, (FSB), and that “the island is now close together due to the disaster. We became really close. We knew and worked with each other before, but know we are really close. Helping each other for the relief effort…This experience brought us together”, (FSB).Some had more critical reflections. As stated by one politically influential foreign resident, the “biggest lesson from the earthquake is that you can classify people, to see who is invested in the island”, with a long term sustainable view. “Many on the island saw the same things, but reacted to them in different ways. Some left the island forever, and some were motivated to come back”, (FSB). However, some business owners and staff  simply did not come back, or took individualistic actions in rebuilding, dealing with staff or contributing financially to collective recovery efforts. Many stated it became apparent what recent businesses cut corners on building costs. The island’s growing popularity has brought new foreign investors not integrated into the island’s social networks. Some are perceived as trying to maximize short term gains with unsafe and non-environmentally friendly building materials and methods, many of which collapsed and left behind non-recyclable material.Self-organized collective action as a means of informal governance  also has downsides. “Self-organization helped on one hand; partly solving problems, but also creates new ones”, (FSB). This included a lack of clear guidelines and rules, defined leadership roles or clear mechanisms for contributing to group financial costs. Established communication channels helped mediate the negative aspects, and certainly aided the response and recovery. “Communication about the island after the earthquake was going through GIDA, their WhatsAppA common reflection was that religion played a role in how locals Indonesians responded, and why many locals faced substantial psychological trauma, as stated by their employers. “Local people [Indonesians] fear the earthquake, because god controls nature. This is why the earthquake has created so much trauma…”, stated a local politically influential Indonesian (LIL). However, psychological trauma affected most people who experienced the earthquake. Most interviewees mentioned that they suffered some degree of post-traumatic stress disorder (PTSD) . Although this study did not focus specifically on psychological impacts, it was repeatedly mentioned that local Indonesians have suffered the most in this regard, with numerous interviewees, including Indonesians, stating what could be summarized as a collective trauma about how to deal with and recover as individuals and as a community.Part of the long term recovery process will be psychological. As one business owner (FB) stated, “it is a hard relationship with locals [after the earthquake] because ‘logic’ [in reference to taking ownership and action in the recovery] can’t compete with ‘fear’”. While many foreign business owners wanted to bring staff back to work and pay them, providing them income and a psychological break from immersion within a disaster mentality, many struggled to empower their staff to work and get back to normal. Among foreigners, social bonds were beneficial and relied upon throughout the event, and even created by going through it together. At least three interviewees got tattoos remembering some aspect of the event, and many stated it changed the way they think about the island and personal development. The following reflection represents a common theme. “I have a friend [who lived and worked on Gili Trawangan before the earthquake]. Her experience after the earthquake, made her immediately leave and never come back. She is now seeing a psychologist…and often texting me why I don’t leave and why I continue to stay. She doesn't understand. I need to see the island recover, I am close with the staff and need to see it recover. I was planning to leave next year, but now I will stay”, (FSB).Among SCUBA businesses, survey data suggest that there was near consensus that the earthquake generally brought businesses together to help each other, and that it did not create more conflict Table . SimilarTourists visiting 3 months after the earthquake were asked questions regarding the earthquake and their travels Table . More thBonding ties are assessed here as the strongest form of social capital on Gili Trawangan Table . Local sCognitively, bonding ties were enhanced through shared experience, a sense of collective responsibility and a mentality of problem-solving that arose in many individuals in the FSB, FB, LIL and NGO communities. Motivated by the actions of others and strong community identity, many contributed to doing the necessary group work. Quantitative results confirm qualitative understanding that the earthquake did not increase conflict, but that there were many positive aspects including opportunity for changing personal trajectories or the island’s, and increased bonding between most groups. Among those who stayed on the island during the closure, “…we made the rule that by sunset everyone had to be back…for safety. Then, we would eat and have drinks and try to have fun together. We drank too much, it was fun. We still had cold beers”, (FSB). In one of the Bali aid groups, “this was ultimately a bonding experience for many people. A good example of the Gili community. The existing social network was a reason for people coming together during the relief effort in Bali”, (FB).Bridging ties are important on Gili Trawangan, they represent interdependencies between the island’s different groups. Bridging ties existed before the earthquake, and findings suggest that bridging ties have increased after. “The idea that the social networks on the island made it more resilient in the recovery is totally true”, (FSB). Bridging ties were well established before the earthquake, making them useful for relief aid. “The social networks on the island and the mentality of self-organization, made the island recovery faster”, (IB), and that “the social network of the Gilis helped speed up the recovery effort”, (FB). Shared activities during the response and recovery broadened connections between groups  who have trust and reciprocity based relationships, and seemed to increase cognitive recognition for the collective identity and interdependencies they all share. The “social fabric of people came together afterwards, it was stronger. I made great friendships with many I didn't know before”, (NGO). “It would be easier to join together after the earthquake and solve problems together”, (FSB). Furthermore, that “everybody realized that Gili is one community after the earthquakes”, (LIL). While bonding ties tend to focus on strengthening existing networks, bridging ties emphasize how the network expands. The earthquake itself seemed to be the catalyst for broadening the network and collective cognitive identity, which highlights the positive influence disasters can have on social capital formation  under the right conditions.Linking ties played an important role, but findings suggest to a lesser degree than bonding and bridging ties. The most important being the global connections that FSB have to tourists in Europe, North America and Australia, providing an influx of aid donations and media attention. Linking ties also helped procure needed supplies locally through business and government connections via FSB and LIL. Linking ties connect people across social institutions such as class and power structures. Connecting previous Gili Trawangan tourists to local Indonesians online was an important aspect of relief aid, both not only practically in the sense of financing needed aid through online donations, but also cognitively in the sense that both business and local Indonesians now know that there is a meaningful global network willing to support recovery.This study supports existing literature suggesting an iterative and positive link between social capital and community disaster resilience, manifested through collective action. Similar findings have been documented in diverse cases e.g., Woolcock . Future Many disaster contexts create spontaneous collective action problems for entire communities who need aid, but the individual incentives or capacities may be lacking to provide them. It can be assumed that communities prefer to be resilient, and to receive the benefits of collective action, and to quickly resume “the rhythms of daily life”  play a role  and positive experiences. Previous social capital on Gili Trawangan facilitated a difficult but positive recovery, in turn further strengthening its social capital. Although much of the literature has focused on network formation e.g., see ‘The Networks View’ in Woolcock and Narayan , Lin 19 and MoodWhat was measured as linking ties, can be interpreted here as the use of social media  connections to link the victims of the earthquake to those with financial power internationally to provide aid. Linking ties helped mobilize financial resources, broadening the network of who was helping the collective action problem. Social media allowed more people to participate in the shared actions and activities for the recovery. We can observe that the social capital built through linking ties occurred through the shared activity of fundraising. This iteratively influenced cognitive bonding and bridging ties, as it showed a sense of shared values and group participation among previously unconnected actors via a shared activity.Disasters are frequent but nearly always unique context dependent events, and the role of social capital in collective action and community resilience may differ in normal situations or in events that are less extreme. Extreme events can reveal what may be present , which otherwise never gets explicitly revealed or emphasized as an important community feature, whether missing or present e.g., Below is the link to the electronic supplementary material.


On the same day, the researcher analyzed the graphic elements of the representations and intentionally selected the two best-detailed drawings from each class (n = 49) and the children were invited to narrate them. The narratives were analyzed through content analysis. (3) Results: Two major themes emerged from the content analysis, namely, the physical environment and social environment. The first included the needs to live in a community, such as housing, places of leisure, essential services, and natural elements. The second was relationships with family and friends. (4) Conclusion: The children presented the meaning of an environment with QoL, pointing out essential items to have this ideal environment. The social environment and the physical environment were perceived interdependently; that is, any change in one of these aspects may affect children’s QoL.(1) Objective: To understand the perception of Brazilian children about the Quality of Life (QoL) considering their living environment. (2) Methods: This is a qualitative study conducted with children aged 6–10 years, from a medium-sized Brazilian municipality, recruited from public and private schools. An adaptation of the “draw, write, and say” method was used to collect data. At first, all children ( The World Health Organization (WHO) conceptualizes Quality of Life (QoL) as “the individual’s perception of their position in life in the context of the culture and value system in which they live and concerning their goals, expectations, standards, and concerns” . It is aWallander, Schmitt, and Koot  reinforcWhen discussing subjectivity in manifestations about QoL, Minayo et al.  report tAlthough subjectivity is a strong aspect, many QoL measures designed to measure children’s perception considered the answers provided by relatives or close adults ,9, whichIt is necessary to understand the children’s perspective on their experiences and environment  to underIt is believed that the scarcity of qualitative studies with this population is associated with the belief that children’s understanding to grasp their world is limited, or they have a hard time expressing their experiences verbally and conceptually. Thus, data obtained in these surveys would be doubtful and invalid ,10. HoweThe other aspect of QoL that must be considered is multidimensionality. We can observe that the QoL construct was strongly influenced by the WHO concept of health, which has a biopsychosocial approach . ConsideGiven the above, considering the possibility of building a generic QoL questionnaire for children, we sought to ensure the subjectivity of the QoL construct by conducting a qualitative study with children. We intended to understand the perception of Brazilian children about QoL considering their living environment.This study was conducted in a medium-sized Brazilian municipality, from September 2017 to June 2018, chosen intentionally for having characteristics similar to most of the Brazilian urban population and for the easy access to children.We opted to know the children’s perception of a quality neighborhood, through the strategy of drawings with narrative , which wThe study population consisted of children aged 6–10 years, living in urban areas in the municipality of the study. The entire study was carried out in elementary schools, considering that children’s school attendance is mandatory by law in this age group . This stPublic schools were selected from their territorial location in the municipality (headquarters and district) and the absolute value of the Basic Education School Socioeconomic Indicator—ESSI (2011/2013), carried out by the Anísio Teixeira National Institute of Educational Studies and Research . In thisAll selected schools included classes from the early elementary school years (first to fifth grades), where children aged 6–10 years are found. A class for each elementary school grade was drawn in each school to secure the participation of children of all age groups. All children in these classes were invited to participate and took home the Informed Consent Form (ICF). Only those who returned with the informed consent form duly authorized by the responsible person participated in the data collection. This project was ethically approved by the Research Ethics Committee of the Federal University of Minas Gerais (CAAE: 68497017.0.0000.5149).Only the leading researcher developed the data collection activities, using a “creative” research method to allow children to express their ideas regardless of their verbal skills and literacy level . MoreoveDraw a neighborhood that has QoL, a good life, a happy life”. The material resources provided by the researcher during the activity were a white sheet of legal size A4 paper (21 × 29.7 cm), and a set of hydrographic pens. Children who wished to use rulers, pencils, or their pens were not prevented. There was no time restriction for the development of the activity. However, the children used about 30 to 40 min.All children authorized to participate in the research were directed to a classroom or spaces provided by the school, such as the library. At first, the researcher held a conversation with the children, making it clear that she was not a teacher, and that despite being an adult, she was a student who was researching a good life for children and who was there to learn. Afterward, all the children were invited to make a drawing, following this command: “After the end of the activity, the drawings were collected, and the children returned to their classroom. On the same day, the researcher analyzed the graphic elements of the representations and intentionally selected  the two I asked you to draw a neighborhood with QoL, a good life. Tell me what you drew in this neighborhood”. Then, the researcher guided the child through the drawing so that he could explain each graphic element drawn, without being limited by predefined questions. The narratives of the drawings lasted up to 20 min (average = ten minutes), were audio-recorded (smartphone), and later transcribed in full. The statements were identified by the letter “C” of “child” with the number of the respondent (C1 to C49), followed by the school numbering (S1 to S5) to ensure anonymity. Before the baseline study, the leading researcher undertook theoretical training and a pilot study, under the supervision of qualitative research experts, to adapt the conduct of the narratives.As an ice-breaker, the researcher made a positive comment about the drawing and asked the child: “The drawings of all children who participated in the study were considered for this analysis. At first, the main researcher verified which graphic elements each child had represented in their drawing, categorizing them into physical objects, social objects, and abstract objects . Then, tA methodological reference for the analysis of the narratives of the drawings was used, which was an adaptation of the content analysis proposed by Graneheim and Lundman , offerinThe municipality where the present study was conducted has 84% of urban dwellings with basic sanitation, 66.8% are located on public roads with afforestation and 22.2% on public roads with adequate urbanization  .Students from schools participating in this study differed in relation to socioeconomic status . AccordiA total of 252 children were included in the study, with 109 (43.3%) girls and 73 (29.0%) boys attending public schools and 23 (9.1%) girls and 47 (18.6%) boys attending private schools.n = 252), it was observed that the children represented physical objects such as natural elements (88.5%), houses (80.2%), buildings (32.5%), means of transport (33.3%), toys (36.1%), places of leisure (28.2%), commerce (17.9%), urban cleanliness (15.1%), school (15.9%), health services (11.1%), and street lighting (8.3%), social objects (57.9%), represented by people, and abstract objects (7.1%), represented, for example, by the symbol of “Peace and Love”   and objects related to urban cleanliness , drawn more by girls (= <0.05) .Although children were not asked to name the graphic elements or write about their design, it was observed that children eventually used this resource. Some expressed positive feelings in relation to the designed environment, writing phrases such as “It is very nice to live here”  or named the neighborhood and its streets using expressions such as: “Happy street”, “Victory street”, “Happy neighborhood”, “Fulfillment neighborhood”, “Victory neighborhood”, “Happy as it can be neighborhood”. Awareness messages were also observed, such as “We must not make cities dirty” . “We must not litter the city nor the school, please keep it clean” .In order to understand the meaning that children gave to graphic elements, the narratives of the drawings were performed. In this stage, a total of 49 children participated, being 24 (49.0%) girls and 15 (30.6%) boys from public schools, and five (10.2%) girls and five (10.2%) boys, from private schools. The proper distribution of the participants concerning age was observed: nine children aged six and ten children in each of the other ages (7 to 10 years). The number of children included in the qualitative sampling was considered sufficient, as data saturation was reached.From the analysis of the transcriptions, we aimed to understand the meaning of objects for children, and themes and categories emerged, as described in The first topic, the physical environment, pointed out essential attributes of the neighborhood, in the children’s perception, to achieve QoL. This included housing, leisure facilities, essential services, and elements of nature. Statements related to housing show the need for a home structure with minimal conditions of comfort, hygiene, and adequate shelter:“A clean house that doesn’t have […] a lot of animals […] for example lizards, mice, rats […]” “A house that is not falling down, like a simple house, but tidy, a house that has no mess […]” ”[…] it has to have a bathroom, living room, kitchen, bedroom […]” .Regarding leisure places, the children pointed out that a neighborhood with QoL must have squares, parks, courts, soccer fields, and clubs. In their view, these environments are structured places to have fun and play. In addition, they promote social interaction with friends and family and contact with elements of nature, such as plants, trees, and lakes. The following statements demonstrate these thoughts:“I made a square for the children to have fun […] there are plants, toys and a place for them to play.” “A town also has to have a leisure area […] to have a picnic, for children to play and have fun.” .“The park is good for spending time with the family, they will have some fun”. .“A square […] For parents and children to interact more, have a better life, run, play on the swing, slide, ride a bike.” .“The court is for children to have a place of leisure […] as it is close to the neighborhood, they could go with their friends to play.” .“The square is for people to sit down […] there is a lake […] there is a tree, there are benches […]” .The children pointed out several urban attributes that are important for the QoL in the neighborhood. Among these, the essential services that are guaranteed by law, such as collective public transport, street lighting, urban cleanliness, food stores, banking services, health facilities, and security are highlighted. It is noteworthy that, although more girls have drawn graphic elements that represent urban cleanliness, no differences were identified in their speeches when compared to boys.“It’s a bus. It doesn’t matter, we have a house and we have to walk a lot to catch the bus, then it doesn’t do it, especially when we are late” .“A light pole. If there is no light, everything is dark at night, then you cannot see.” .“I drew […] the garbage dumps […] if it [the neighborhood] is not clean […] we are getting sick […] it can bring several bacteria and dengue mosquitoes.” .“The trash is not to let the neighborhood very dirty.” .“The supermarket…because we buy […] things to eat.” .“We have to use the bank often, […] all of these (things) are there for us not to go far, for us to have access.” .“A hospital […] when someone gets sick or has a problem. You just take them to the hospital, and they are taken care of.” .“If someone was sick […] if we didn’t have a health post, he could die.” .Ensuring public safety in the neighborhoods is essential to achieve the children’s desire to live in a quiet and violence-free neighborhood:“Nobody fights with anyone; there’s no shooting, there are no thugs. Everyone is calm, in their corner.” .“Love […] the real neighborhood has to have this […] you have to sit and talk, […] make things up.” .“A neighborhood that has nothing wrong […] that doesn’t have much movement on the streets” .Although this study did not seek to understand the reality that children live, it was observed in their speeches that public security can be ineffective, since feelings of danger and insecurity in relation to their living environment were pointed out. It is assumed that this perception is being included by family members, since children expose in their reports the parents’ view of the danger in their environment:“Because if I go alone [to the park], […] some men […]. some bikers would catch me […] I will only go when my mother goes.” .“I don’t leave the house because my mother doesn’t let me […] she said that I can play inside or outside on the balcony […] on the street not […] because there may be cars and buses.” .“No, I can’t [fly a kite on the street] because my mother is afraid of the bad people in my neighborhood […] the bad guys” .These negative experiences may have influenced the children’s perception, which made them look for resources that would increase the security of their homes, the neighborhood and the streets. The children drew watchmen, policemen, guard dogs, high walls, bars on the windows, and reported that the presence of these elements could inhibit violent acts in the neighborhoods:“[…] Many people can’t jump over the wall, because the wall is high […] there was a dog there […] they barked too much and helped us because a thug wanted to steal some things from the little room […]”. .“Because if someone gets in, the dog will bite.” .“[…] Then like a dog, it just likes the owner, then if another person is going to do bad things, then it goes there and bites them […] It can help me.” .“[…] There are three watchmen […] at night they have a motorcycle, each one goes to a neighborhood […] so as not for people to steal, so that bad things don’t happen”. .“Having more security, having more policemen in the neighborhood going around […]” .The children also pointed out that some resources in the neighborhood could increase their safety in traffic:“[…] without traffic signs […] a car could run over […] These are pedestrian crossings […], and accidents don’t happen.” .Although the school is an environment frequented by all the children in this study, it was observed that this space was poorly designed and explored. Only two points were found in the children’s speeches: the school must be close to home and it is a place of learning that will collaborate with the child’s future.“The school is the place that teaches children. So, it is good for making children smarter and …and improve in the future, to raise awareness.” .“So children don’t have to leave their neighborhood to study […].” .For children, a neighborhood with QoL must have elements of nature, such as trees, plants, flowers, rivers, lakes, sun, and rain. In this study, it was more common for girls to draw these elements. However, there were no differences in children’s perception based on gender. Both are aware of the importance of the environment for maintaining terrestrial life and the need to preserve it:“Rain is important for plants to grow.” .“Rain is good for plants.” .“[…] It’s water, and they also go to rivers and sewers, it becomes clean for us to drink and wash the pots, the bathroom.” .“The house needs water […] without it, nothing works […]” .“For when you are cold, the sun warms you up. If you are homeless.” .“The sun […] provides light and warmth” .“The sun has a vitamin […] staying. in the sun before 10 a.m. is very good, but then […]” .“The tree makes us breathe properly […] The air is good for us to breathe […]” .“For us to have some shade and breathe.” .“[…] Some trees bear fruits, and fruits are healthy for us […]” .“[…] They bear fruits that are good for health, for example, orange, apple […]” .“Because if you don’t take care of them [trees], they can die.” .“oh, to preserve nature … also because there are a lot of people cutting trees.” .“I designed few cars because the smoke pollutes the environment […] I did it there more to demonstrate liveliness, which is in need” .“[…] Cars [produce] a lot of smoke and pollute the air.” .The second theme, the social environment, pointed out the importance of social interaction with family and friends to obtain a quality life. In addition to the family being associated with positive feelings, affection, and care, the children were able to understand that parents are fundamental to guarantee their basic needs:“We have to love our family a lot […] they help us do everything […] study […] work to buy our little things.” (C1-S3).“[…] Taking care of us with affection, love, kisses, and hugs.” (C4-S2).Relations with friends were also frequently commented on. In speeches, friends were always present in games and conversations. Furthermore, it was with them that children shared their things.“[…] it’s good to have friends […] we lend and share things.” (C1-S1).“Me and my friend […] we can talk to them about many things we don’t like, that we are ashamed to tell our dad and mom.” (C9-S4).“I like to send a lot of emoji to my friends.” .“Play hide and seek, high pike, colorful elephant” (C3-S5).“[…] I like to go to her house, because […] she plays with me.” .This study aimed to understand the meaning of QoL in the environment from the perspective of Brazilian children. It was not in the interest of this study to learn about the reality of children, but how they conceive a good place to live.Two themes were identified from the narratives of the drawings: the first revealed issues related to the physical environment, showing how the organization of cities and society are essential to achieve QoL, in the children’s perception. The second pointed out the importance of social interaction with family and friends to achieve a quality life.The first theme reported in this study included the physical environment of the neighborhoods. Besides their own home, children spend most of their time in the neighborhood. Therefore, it is the experiences lived in these places that make them assess which aspects are essential for their lives, and what can be improved in the environment ,36,37. IStatements related to housing show the need for a home structure with minimal conditions of comfort, hygiene, and adequate shelter. These characteristics are fundamental in supporting the wellbeing of residents and are perceived by children as aspects that interfere with QoL .Children mentioned different urban services, categorized as “essential services” since they are fundamental to human life. Possibly, it was the positive or negative experiences of users that made them realize how important these places are , or moreOn social rights, Article 6, and are internationally recognized as universal human rights:It must be remembered that although they may not be aware of the text of the Brazilian Constitution, these children’s manifestations are described in Chapter II, Article 6. Education, health, food, work, housing, transportation, leisure, security, social security, maternity and child protection, assistance to the destitute are social rights, in the form of this Constitution [titution .One cannot talk about QoL without assuring these rights, and children already understood this. However, none of the items in this category were actively explored by the children, not even the school, the primary environment in the children’s context . Other sThe combination of structural elements with nature also stood out in this study. Most of the children drew elements such as trees, plants, flowers, rivers, lakes, sun, and rain. As observed in the literature ,43, theiAnother point to be highlighted is that some children concentrated on the natural elements in an area of their drawing, representing the importance of the presence of green areas in the neighborhoods. Studies point out ,46 that In the opinion of the children in this study, green areas, together with other public spaces, provide children with leisure time with the development of recreational activities, together with friends and family. According to them, recreational activities and games are essential to obtain better QoL and are favored when the neighborhoods have fields, parks, and playgrounds, preferably well-structured and with playground equipment. These reports corroborate the study  and reinHowever, there is no point in having well-equipped public spaces if other factors prevent the child population from using them. Some children report the prohibition of attending some public spaces in the neighborhood or even walking without the presence of an adult . This liThe danger in the neighborhood was reported by the children from two perspectives: community violence and safety in traffic. As per the literature ,50,51, tThe emergence of the social environment theme, which encompasses relationships with relatives and friends, is widely explored in studies that measure children’s QoL . Their cAmong these relationships, family relationships appeared as an essential aspect of QoL, which was also observed in the literature ,16,54. CThe children in this research also recognized social relationships outside the family as essential, and frequently drew and commented on the existence of friends. They believe the bond with friends, generated through games, conversations, and attitudes of cooperation and kindness, are essential factors for achieving a quality life. According to Wee, Chua, and Li , having The theoretical model obtained in this study reinforced the concept that already exists in the literature , which iAll categories shown here must be evaluated when planning neighborhoods and cities. If this happens, the child’s perception will be considered, allowing creating well-planned environments that allow them to benefit from their physical and community environment; that is, they will provide friendlier urban environments . The conTwo points of this study deserve to be highlighted. Firstly, despite the intentional inclusion of children from different socioeconomic conditions (ESSI), no selection for any specific condition was performed. All children authorized by their parents and who wanted to participate were included in the study. This characteristic allowed verifying the perception of QoL in the environment in a generic way. This approach was different from other studies ,17,18,19The second point relates to the research methods used. We chose to use a child-centered, participatory research method , recogniAlthough this study is unprecedented, it is exploratory, and with limitations. The details of all phases of the study  have been presented in this manuscript, however, qualitative research is inherently interpretive, which limits another researcher to replicate and to produce identical findings . This reThe children drew and presented the meaning of an environment with QoL, pointing out items that they considered essential to have this ideal environment. The social and physical environments were perceived by the children interdependently; that is, any change in one of these aspects may have an impact on children’s QoL. All of the items mentioned refer to basic premises that should exist in a society committed to human rights. It is necessary to consider the multidimensional concept of QoL, and mainly, the necessary subjectivity in studies and evaluations, even in children.


The informal curriculum is a seemingly well-explored concept in the realm of medical education. However, it is a concept with multiple definitions and the term “the hidden curriculum” is often used interchangeably. In short, they both refer to the implicit learning taking place outside the formal curriculum, encompassing both a trickling down effect of organizational values and attitudes passed on by a mentor or colleague. While the informal curriculum is a recurrent theme in medical education literature; it is seldom discussed in Family Medicine. As the informal curriculum is likely to be highly influential in the forming of future family practitioners, our aim was to explore the area further, with respect to the following: which elements of the informal curriculum are applicable in a Family Medicine context and what educational interventions for Family Medicine residents, visualizing the various educational elements of it, have been performed?We conducted a systematic review comprising iterative literature searches and a narrative synthesis of the results.Twenty articles, published between 2000 and 2019, were included in the analysis which resulted in three partly interrelated themes comprising the informal curriculum in Family Medicine: gaining cultural competence, achieving medical professionalism and dealing with uncertainty. The themes on cultural competence and uncertainty seemed to be more contextual than professionalism, the latter being discussed in relation to the informal curriculum across other medical disciplines as well. Formalized training for Family Medicine residents in aspects of the informal curriculum appeared to be lacking, and in general, the quality of the few interventional studies found was low.Important aspects of being a family practitioner, such as cultural competence and dealing with uncertainty, are learned through a context-dependent informal curriculum. In order to ensure a more uniform base for all residents and to reduce the impact of the individual supervisor’s preferences, complementary formalized training would be beneficial. However, to date there are too few studies published to conclude how to best teach the informal curriculum.CRD42018104819.The systematic review was registered with Prospero; registration number  The hidThrough the process of narrative synthesis three overall, and partly intersecting, elements constituting the informal curriculum of FM were developed: gaining cultural competence, achieving medical professionalism and dealing with uncertainty.The first element - ‘gaining cultural competence’ - was derived from six of the articles included; there were two surveys, two qualitative studies, one review, and one opinion article dealing with this subject matter , 30, 31.The gaining of cultural competence was, to a great extent, agreed to occur in an informal manner , 30, 31.The second element – ‘medical professionalism’ – is also a complex and broad concept varying over time and within cultural contexts, and can be assessed on several levels: individual, inter-personal, and societal-institutional . ProfessThe third element – ‘dealing with uncertainty’ – was derived from two of the articles included; one qualitative study and one opinion article , 33. UncSix quantitative studies –48 were Two qualitative studies were also included , 49 bothOne of the studies used mixed methods, where a qualitative analysis of reflective texts and photos taken by residents were combined with a questionnaire . AlthougTwo of the studies only briefly described their methods, which mainly seemed to involve discussions , 52.Of the interventions included, six took place in the U.S. , 49, 51,There was an equal distribution between isolated workshops taking place within a short time frame (< 3 months) ranging in number of occasions from 1 to 10 , 50–52, Various educational settings were used; small-group settings , 48–52 aA wide variety of teaching interventions were used, the most common being small-group discussions , 51, 52.Expected learning outcomes were in most of the studies mentioned briefly or in general terms , 46, 51 The authors of this review assessed the impact of the interventions according to Kirkpatrick’s hierarchy  themes: gaining cultural competence, achieving medical professionalism, and dealing with uncertainty. In addition to elucidate these three themes, our study had two other main findings. First, unlike professionalism, which seems to be a common theme in the informal curriculum across different disciplines –56, bothThe various elements identified will be discussed in relation to previous work in other specialties and on various educational levels.The element identified as ‘achieving medical professionalism’ seems to be a recurring theme of the informal curriculum across both educational levels and disciplines –59. Our More interesting are the other elements which seem to be more specific to FM’s informal curriculum: ‘gaining cultural competence’ and ‘dealing with uncertainty’. Cultural competence and dealing with uncertainty are skills likely to be relevant across the field of medicine but maybe, for the moment, more explicitly discussed and valued in FM. Uncertainty has, for example, been suggested as increasingly prevalent in general practice, as patients are more likely to present with early, and thus more undifferentiated, symptoms and signs of illness than in a hospital setting , 60. In how it is transferred, i.e. informal learning. Existing literature on how the informal curriculum is taught mainly focuses on a pre-graduate context, while research on how informal learning takes place in the workplace is limited [In addition to themes in the informal curriculum being identified within various specialties, various articles dealing with the subject matter also discuss modes of  limited . Given t limited , 3, we hIn models focusing on workplace learning the concept of informal learning has been elaborated and different types have been outlined: implicit, reactive and deliberate , 8. The Looking across all educational levels, role-modeling/mentorship is repeatedly highlighted as important , 62, 63.Formalizing learning activities does not by default equate effective learning . HoweverWe acknowledge that this literature review may not thoroughly reflect the state of existing curricula for Family Medicine residents on cultural competence, professionalism and uncertainty. Although the literature search was extensive, relevant articles may have been missed as curricular interventions tend to be published within the realms of grey literature. Also, the search terms may not fully cover all aspects of that which is outside of the formal curriculum. In order to try to compensate for this, we performed thorough manual searches, which also generated 30 additional articles. In the end, however, the small number of articles included is a limitation, as it is likely to also affect the depth and breadth of the discussion within the various element identified. This is particularly the case for the element ‘dealing with uncertainty’ which was discussed in only two of the included articles.In addition, we classified the interventions according to the information provided, which in some articles was very brief and at times lacked clarity. Consequently, our descriptions may in some instances be lacking in terms of capturing the full dimensions of the respective curriculum.Finally, as we anticipated diversity amongst the study designs and the fact that few studies have been published, we set out to do a narrative synthesis  rather tIn our opinion recognizing and pinpointing what the informal curriculum entails in various contexts have three main implications. First, awareness might be raised in supervisors of the areas in which they are likely to have a great impact on their respective resident(s). Second, the gaps where there might be a need for formalized learning activities could also be identified. Finally, it would also signal to residents that these aspects of learning to be a family practitioner are valued. In order to further analyze the concept of the informal curriculum in various contexts, using an inductive approach would be beneficial. We would therefore suggest further qualitative studies of the concept in various fields to reduce the risk of continuous generalizations. In addition, by exploring the individual elements inductively, in particular ‘dealing with uncertainty’ where studies seem to be lacking, a more profound understanding of the contextual use of the concepts may be reached.The particularities of FM, such as learning to manage a great deal of uncertainty, are to some extent reflected in its informal curriculum; emphasizing the context-dependent nature of the concept. Recognizing the informal curriculum as consisting of multiple informal curricula would likely facilitate a more pragmatic use of the concept in general. In FM in particular, where important aspects of being a family practitioner are learned through the informal curriculum, it would be beneficial to formalize parts of it for two reasons. First it would reduce the dependency on the individual supervisor’s interests or preferences by providing a more uniform base for all residents. Second, formalizing parts of the training might facilitate learning which is more likely to be retained; and be reflected in changes in attitudes and behaviors. The current literature is, however, not sufficient enough to conclude how to best teach the informal curriculum.Additional file 1. Original search string. Search strings used for the various data bases searched.Additional file 2. Updated search string including uncertainty. Updated search strings including “uncertainty” and similar terms.Additional file 3. Updated search string including professionalism. Updated search strings including “medical professionalism” and similar terms.Additional file 4. Updated search string including cultural competence. Updated search strings including “cultural competence” and similar terms.Additional file 5. A summary of the studies included for question 1. Articles included are listed and described using the following headings: “defines informal curriculum”, “type of article”, “participants”, and “elements of the informal curriculum”.Additional file 6. A summary of the studies included for question 2. Articles included are listed and described using the following headings: “informal curriculum theme”, “evaluation methods”, “expected learning outcome”, “context”, “impact of intervention”, and “strength of findings”.Additional file 7. A summary of the development of concepts and themes from articles included for question 1. Summarizes data underlying the development of the concepts and themes for question 1.


Childhood cancer survivors (CCSs) are at increased risk of chronic health problems. Effective self-management could help CCSs cope with the challenges that accompany survivorship and reduce their risk of developing further health problems. There is little evidence about the extent to which CCSs engage with self-management and the specific strategies they use. This study aimed to identify and explore the strategies that CCSs use to manage the consequences of cancer.Twenty-four CCSs were recruited via follow-up clinics. Participants completed a semi-structured interview which was audio-recorded and transcribed. Directed content analysis was used to identify self-reported self-management strategies and categorise them into main self-management types.n = 20) and “attending follow-up and screening appointments” (n = 20).CCSs reported 118 specific self-management strategies which fell under 20 main self-management strategy types. All CCSs reported using several main self-management strategy types and specific self-management strategies. Main strategy types used by all CCSs were “adopting a healthy lifestyle”, “self-motivating”, “using support”, “reasoned decision-making” and “creating a healthy environment”. The most common specific self-management strategies were “receiving family support”  contains supplementary material, which is available to authorized users. As a consequence of advances in paediatric cancer treatments, there are now approximately 40,000 childhood cancer survivors (CCSs) in the UK , and up Self-management is a well-recognised concept in chronic diseases. It involves the individual monitoring the condition and using a range of strategies—such as decision-making, problem solving, or resource management—to maintain a sense of wellness, rather than illness . EffectiIn cancer, self-management has been defined as an “awareness and active participation by the person in their recovery, recuperation, and rehabilitation to minimise the consequences of treatment, promote survival, health and well-being” . A growiTo inform the need for, and development of, supported self-management approaches for CCSs, there is a need to better understand self-management among CCSs. It is possible that—because of their age and life stage—CCSs’ willingness and ability to engage with self-management, and the strategies they adopt, may differ from those of adults diagnosed with cancer in middle or older age. Evidence suggests that CCSs may have poor knowledge about their disease, its treatment, and any potential health implications , and oftEvidence is limited on self-management in CCSs. A few studies have identified self-management strategies used by adolescents and young adults in active treatment , and theThis study aimed to identify strategies that young adult CCSs use to manage the consequences of cancer in their everyday lives and explore how CCSs describe using these strategies and the psychological processes underlying these reported strategies.The study used qualitative methodology (semi-structured interviews) to collect deep and detailed data of CCSs’ experiences of self-management.Participants were young adult CCSs who attended outpatient follow-up clinics at a principal treatment centre for childhood cancer in the North East of England. Individuals were eligible if they had been diagnosed with haematological cancer, or central nervous system (CNS) or other solid tumour at age 18 years or under, were currently at least 18 years old, at least 3 years from diagnosis, no longer on treatment, and free from cancer for at least 1 year; could communicate in English to a level which would allow them to participate in an interview; and would be able to provide informed consent.To identify potentially eligible survivors, consultants and nurse specialists screened patient lists of forthcoming clinics. Purposive sampling was used to ensure participants had a range of diagnoses  and times since diagnosis (< 5 years/≥ 5–10/> 10 years). Survivors considered eligible were provided with brief information about the study by mail in advance of their clinic appointment, or verbally from their consultant/nurse specialist whilst at the clinic.Whilst at clinic, survivors who were potentially interested in the study were asked if they consented to their contact details being passed onto the researchers (MB and AH) or, if a researcher was available, asked if they would agree to briefly meet them. Survivors were provided with an information sheet, were able to ask questions, and were able to state if they wished to be contacted further regarding the study or not. After at least 2 days, the same researcher subsequently contacted the interested survivor by phone to ask if they would be willing to take part in the study and arrange a convenient date and time for the interview. The study was approved by the London City & East Research Ethics Committee (REC reference 16/LO/2267).Interviews were conducted by MB and AH, both of whom are health psychologists trained and experienced in qualitative research. Interviews were conducted either face-to-face (in a private room within a university research department or at the survivor’s home) or by telephone, as the interviewee preferred. All participants provided either written (for face-to-face interviews) or verbal consent .Interviews were semi-structured using a topic guide, which comprised open questions informed by literature review, theory, and expert knowledge , 26. TheRecruitment continued until data saturation as per the principles defined by Francis et al . InterviInterviews were transcribed verbatim. Transcripts were anonymised and pseudonyms applied. The current analysis focused primarily on identifying and exploring self-management strategies reported by CCSs, i.e. strategies they actively engaged in to improve or maintain their health and well-being. Therefore, directed content analysis which uses previous research findings to inform the structure of the analysis was employed –31. By dDunne et al.’s (2017) framework of self-management strategy types , derivedn = 6 out of 24) and coded relevant text to the framework categories. Any text which appeared to be describing a self-management strategy but which could not be coded into existing categories was coded into a new category and given a suitable descriptive coding label. The researchers met to discuss similarities, differences, difficulties, and any newly identified categories. Coding rules were developed to help distinguish between categories, with anchor examples providing concrete examples of each specific strategy  has made me fitter.” Chris, 25 years oldCCSs also described attempts to improve how they eat  and what they eat .“I used to just eat until I couldn’t physically eat any more, now I will just eat until I feel slightly full and stop right there and it really helps a lot.” Abigail, 18 years oldTo protect their current and future health, most CCSs reported reducing or limiting negative health behaviours, mainly limiting alcohol consumption but also limiting consumption of sugary drinks and sun exposure. Avoidance of negative health behaviours  was also common.“I don’t drink alcohol, I don’t smoke, I don’t do drugs, so they’re the big three.” Daisy, 23 years oldMost survivors also reported taking a range of prescribed medications to maintain their physical and mental well-being .“I’m taking the stomach tablets, as I said, I’m doing that, but I think I used to take penicillin or something similar on a daily basis, but I don’t want to take tablets all the time. The stomach ones, I can feel the real benefits, so I’ll do it.” Matthew, 33 years oldA small number of survivors reported other strategies such as ensuring they were regularly washing their hands, drinking enough water, taking vitamin and mineral supplements, meditating, and ensuring enough sleep.Survivors felt it was important for them to take responsibility for their own health. For several, control over their health was considered important in order to prevent future illness and there was a recognition that as young adults, they themselves were responsible for this and not their healthcare professionals or parents.“I am 21 now so you have got to sort it out yourself in your head and say, ‘I can do this’.” Oonagh, 21 years oldParticipants acknowledged that motivation is key for undertaking positive health behaviours and achieving health goals. They described how wanting to maintain their health and look good motivated them to look after their health. Other motivational strategies included self-encouragement and determination. Some survivors commented that despite struggling with some health behaviours initially , perseverance meant that these behaviours were now part of their life.“I don’t necessarily think about my medication because it’s like err, it just … sometimes I do it without even realising that I’ve done it erm, it’s like a bit of like an instinct now, like I don’t even look at the buttons anymore, I just know what to do without looking.” Abigail, 18 years oldStrategies which helped CCSs to stay motivated included a realisation of their strength and resilience, maintaining a positive outlook, not dwelling on the past, challenging themselves, and developing confidence. For some, their self-motivation improved as they moved further beyond treatment; they considered that this meant there was less chance of the cancer returning. Social interaction was viewed as being important to keep motivated and engaged.“I’ve more and more started saying hello to people. And that little bump in the morning of talking to random strangers who are walking dogs, is actually quite nice. So that’s a like little bit of holistic therapy I’ve been doing for meself.” Chris, 25 years oldParents and, for some survivors, their partners provided emotional and practical support . For some, parents also provided financial support. CCSs described how parents, partners, friends, and healthcare professionals within their cancer care team encouraged them to take care of their health. CCSs described how support provided by their cancer care team included advice and information about follow-up care, services available, and emotional support.“I feel better seeing them [cancer follow-up team] because I do get like I said paranoid at times with my health and that, so when I do go to them they check me so it gives me that ease that ok they’ve checked me there’s nothing there.” Laila, 18 years oldWhether it was a parent, friend, or a professional, many survivors acknowledged it was just good to have someone who you can talk to, should you need it. Friends gave the survivors someone to laugh and talk with and were often important sources of motivation and support when undertaking planned exercise. Several survivors received support from those with similar experiences to whom they could relate, including other cancer survivors and people with other conditions or disabilities, or other young people who also felt “different”:“I think I’ll only ever need him [a friend] because he’s different as well. He’s not disabled, but he’s different in his own way … when we went out we were like, “we’ll face it together”, do you know what I mean? He was, like ‘I don’t care about the way you walk’. I always said to him, ‘I don’t care about the way you look'. So, we did it together.” Rosie, 22 years oldParticipants also sought or received formal support from their general practitioner and from psychologists, psychiatrists, counselling services, and physiotherapy and from charitable organisations such as Teenage Cancer Trust. A few also reported encouragement and practical support from teachers and their school or university or place of work. A few mentioned companionship from a pet, and for these survivors, their dog was viewed as a key source of emotional support.“You can’t really feel rubbish when you’ve got a dog around, at least I don’t think so anyway.” Matthew, 33 years oldMost CCSs described their views about a range of health behaviours and how these influenced their reasons to engage in, or abstain, from them. The positive physical and psychological benefits of physical activity/exercise were widely reported: survivors felt more confident, happier, and refreshed afterwards. Positive health behaviours  were seen to have immediate effects on well-being as well as being potentially beneficial for long-term health:“I’d definitely say swimming is the best one because it uses every muscle and it’s keeping yourself healthy and stuff. It just calms you cos you feel a lot better.” Joanne, 21 years oldConversely, the harmful effects of negative health behaviours were offered as reasons to not engage in these behaviours by most, but also as reasons to stop by those who felt they consumed too much alcohol or who were current smokers:“But I need to stop smoking because … you … just can’t run for toffee if you smoke so.” Alice, 32 years oldIn addition to acknowledging the benefits of positive health behaviours, several CCSs also described weighing up of the pros and cons associated with self-management. The disadvantages of taking action to self-manage their health included the “hassle” of taking medications, the potential implications of medications on future pregnancies, the financial cost of looking after yourself, and anxieties associated with attending follow-up and experiencing “scanxiety” whilst waiting for scan results. For a few survivors, potential cons of physical activity were that exerting yourself could lead to feelings of fatigue, and for two survivors, there was uncertainty about the risks involved in taking part in particular activities and concerns about safety:“So it’s too big a risk really, just anything like that [playing football] and I’m not much of a risk-taker. I’d rather just play it safe and avoid the activity, rather than risk getting hurt and something bad happening.” Beth, 25 years oldSome CCSs who experienced negative thoughts and emotions, reported trying to think objectively about these. They described ways in which they recognised they had negative patterns of thoughts which, if focused on, could lead to a worsening of mental health. Survivors described efforts to re-direct their thoughts in a more positive way, rationalising their thoughts and being kinder to themselves:“Try to rationalise things more. Try and relax more. It’s easier said than done. Try and be more positive and not scrutinise things and go over things so much. I massively self-doubt and am very pessimistic.” Quinn, 27 years old“I got a little leaflet thing, it’s like a few A4 pages, it erm, it’s basically a summary of my all my medication and that and history and all that, it’s just literally just bullet points telling me what not to do.” Tara, 18 years oldMost survivors described attending their follow-up appointments as a way of self-managing their health. Many reported that they had received written information from their clinical team, such as a treatment summary and care plan or information on healthy lifestyles:Some talked about actively asking their healthcare provider about their diagnosis, treatment, and its implications, and others spoke about seeking information on the Internet, particularly as they aged . Others discussed the relationship they had with their oncologist/haematologist and the wider healthcare team: because they had often known these team members throughout their illness trajectory, this relationship was valued and trusted.“I mean I wouldn’t be here today if it wasn’t for their hard work and you know what I mean for them so I wouldn’t … he didn’t let me down so can I really afford to let them down? No.” Hugh, 26 years oldSurvivors also reported that they themselves had secured resources such as gym membership, gym equipment, and cookbooks to aid self-management. Several survivors reported how they utilised skills for independent living such as cooking or understanding nutrition labels on pre-packed foods and two described learning particular skills (how to take their medication and techniques for stress management).CCSs are at risk of a wide range of medical, neurocognitive, psychological, and social problems which, for some, persist or worsen over time or may even become more complex because of the development of new late-effects or health conditions as they age. Encouraging and facilitating self-management is (or should be) a feature of high-quality LTFU care for CCSs . In ordeThis study identified the self-management strategies and processes that CCSs employ in order to actively care for their health and well-being. Approaches reported by all CCSs included the use of social networks for support, the adoption of healthy behaviours, strategies to increase motivation to engage in effective self-management, the use of objective decision-making processes to form views on health behaviours, and attempts to create environments favourable for self-management. Survivors acknowledged that they adopted these strategies not only to aid rehabilitation from cancer treatment and to manage any current conditions but to also maintain and protect their current and future health.Use of qualitative methods enabled CCSs to self-report and describe the numerous and varied strategies they employ to look after all aspects of their well-being. Classification of reported strategies was informed by previous self-management typologies and frameworks for cancer survivors and chronic illness , 14, 24.Although all the main strategy types proposed by Dunne (2017) in the context of adults diagnosed with cancer were also identified in the responses of CCSs , the prePopular strategies to increase self-motivation reported by participants included maintaining a positive outlook, encouraging oneself, drawing strength from past experiences, and employing a determined attitude. These psychological strategies are common in chronic illness and among adult cancer survivors , 24. CCSPeers, and to a greater extent families, have been found to be important sources of emotional and practical support for young adult survivors of cancer , 42, andIn attempts to create a healthy environment, our CCSs reported actively acquiring information, materials. and resources to aid self-management to a greater extent than adult survivors . This matreating illness as a project, drawing on spiritual resources, focusing on getting back to work). This is likely to be due to the differences in participant demographics (age and life stage), clinical management and functional limitations associated with the cancers under study, and time elapsed since diagnosis/treatment. Therefore, although the self-management typologies provide a useful and important starting point, and many self-management strategies will be apparent across different cancer populations, some will differ. This highlights the need to undertake empirical research within the specific patient group of interest and employ inductive analysis alongside deductive analysis, particularly if the findings are to be used to inform intervention development.Some strategies that are very common in adult cancer survivors   were repIt is important to note that higher frequencies of reported use do not necessarily indicate those strategies that are the most important to CCSs or, indeed, those that survivors found most helpful or effective . For insAs well as identifying strategies that have been highlighted in previous studies (as described above), we were able to identify a range of strategies which have not been well-reported in CCSs. For example, participants reported cognitive and behavioural strategies of conserving emotional energy, activity-based coping, behavioural avoidance, adoption of health promoting behaviours (other than diet and exercise), use of goal and action setting, approaches to managing others, use of proactive problem solving, use of reasoned decision-making regarding health behaviours, and engaging in self-monitoring. These findings offer an insight into the practical approaches used by CCSs to manage their health and well-being. Moreover, many of these strategies are associated with behaviour change techniques , which are the “active ingredients” of behaviour change interventions and, indeed, self-management interventions . This isThe findings also indicate—for the first time—that survivors use strategies associated with behaviour change particularly in relation to physical activity and diet, both of which are reported to be problem areas for CCSs. There is a paucity of research regarding why survivors struggle to maintain positive health behaviours , and ourA significant challenge for care of CCSs internationally is how to ensure effective transition to long-term follow-up . During A strength of this study was its qualitative approach which enabled survivors to talk freely. We had a good response to the study in a patient group well-known for being hard to engage with research . ThroughIn terms of limitations, CCSs were recruited from a single clinical site. However, this is the principal treatment centre for whole of the Northern Region of England and provides similar services to principal treatment centres in other regions of the UK. Participants were in follow-up care and CCSs who have been discharged, or who choose not attend follow-up, may report different strategies and potentially be less engaged with their healthcare . The stuIn the short term, these findings may help make health professionals involved in the care of CCSs more aware of survivors’ willingness to engage in self-management. They may also indicate strategies that professionals could suggest to their patients. Interventions to encourage self-management are being developed for a range of adult cancers . To infoThis study has, for this first time, identified the many and diverse strategies used by young adult CCSs to manage the challenges of living with and beyond cancer. The findings may inform the development of interventions to encourage and facilitate self-management tailored specifically for this growing population.ESM 1(DOCX 82.0 kb)