Home-based interventions have potential for improving early child development (ECD) in low-resource settings. The design of locally acceptable strategies requires an in-depth understanding of the household context. In this formative research study, we aimed to characterize the home play and learning environments of children 6–23 months of age from low-income households in peri-urban Lima, Peru.Drawing on the developmental niche framework, we used quantitative and qualitative methods to understand children’s physical and social settings, childcare practices, and caregiver perspectives. We conducted interviews, unstructured video-recorded observations, and spot-checks with 30 randomly selected caregiver-child dyads, 10 from each child age group of 6–11, 12–17, and 18–23 months of age, as well as key informant interviews with 12 daycare instructors. We analyzed the data for key trends and themes using Stata and ATLAS.ti and employed an adapted version of the Indicator of Parent-Child Interaction to evaluate the observations.Children’s social settings were characterized by multi-generational homes and the presence of siblings and cousins as play partners. Access to books and complex hand-eye coordination toys  in the home was limited . Caregivers generally demonstrated low or inconsistent levels of interaction with their children; they rarely communicated using descriptive language or introduced novel, stimulating activities during play. Reading and telling stories to children were uncommon, yet 93.3% of caregivers reported singing to children daily. On average, caregivers ascribed a high learning value to reading books and playing with electronic toys , and perceived playing with everyday objects in the home as less beneficial (rated 6.8/10). Daycare instructors reinforced the problems posed by limited caregiver-child interaction and supported the use of songs for promoting ECD.The features of the home learning environments highlighted here indicate several opportunities for intervention development to improve ECD. These include encouraging caregivers to communicate with children using full sentences and enhancing the use of everyday objects as toys. There is also great potential for leveraging song and music to encourage responsive caregiver-child interactions within the home setting.The online version contains supplementary material available at 10.1186/s12889-020-10119-3. Children’s early learning experiences profoundly shape health and development throughout their lifespan. Critical periods of cognitive, motor, and socio-emotional development begin during the prenatal period and peak during the first 2 years of life , 2. WorlDuring the first 2 years of life, responsive caregiver-child interactions, nurturance, and access to stimulating, age-appropriate activities are key to fostering ECD –9. OpporFor children growing up in low-income contexts, experiences take place primarily in the home environment. These children are less likely to be exposed to stimulating and appropriate caregiver-child interaction within the home –22. In dThere is growing evidence that home-based interventions, in which community health workers (CHWs) or other paraprofessionals make home visits to provide training and support to caregivers, may mitigate the negative impact of poverty on ECD –27. ThesThese research gaps point to the need to focus on the “child-in-context” in order to effectively understand and address household-level influences on children’s early life experiences . Super aCuna Más program to gain additional perspectives from individuals with intimate knowledge of ECD in this setting. The study comprised the first stage of formative research to develop an ECD intervention targeting caregiving behaviors in this population, and thus was used to identify needs, assets, and opportunities for improvement.In this exploratory study, we drew on the developmental niche framework to characterize the home learning environments of young children in peri-urban Lima, Peru, with an emphasis on play and communication. Focusing on the “child-in-context,” we used quantitative and qualitative methods to explore children’s physical and social settings, childcare practices, and caregivers’ perspectives as they relate to opportunities for play and caregiver-child interaction. In addition to caregiver and child participants, we also recruited local daycare instructors from the government-sponsored Villa El Salvador, located on the southern outskirts of metropolitan Lima, Peru. Despite the country’s economic growth and improvements in many child health indicators in recent years, ECD remains a major challenge —they don’t say words and how they’re pronounced … So the majority [of children] here in this community don’t speak much.” During the observations, children—even those close to 24 months of age—rarely said words themselves.Accordingly, several daycare instructors commented on the low levels of verbal communication in the home setting, pointing out that it was customary for caregivers to use affectionate, diminutive terms rather than longer sentences. As one instructor reported, “With regards to playing with children, observation data revealed that caregivers at times “followed the child’s lead” by joining or imitating an activity in a non-intrusive manner, such as tossing a ball back to the child. The majority of caregivers (89.7%) provided toys or other objects for the child to play with during the observation; toys were entirely absent in only two cases. However, it was far less common for caregivers to engage the child in a way that “maintains or extends the child’s focus,” described by the IPCI as a “higher order skill” as compared to simply following the child’s lead. Caregivers rarely introduced novel, stimulating activities through words, expressions, or gestures. Rather, caregivers tended to watch or leave the room once children became interested in an activity, at times leaving them to play with older siblings or other children.I sing to him. Everything that I learned in school, the knees and toes—'Head, Shoulders, Knees and Toes.’ I sing about the little chicks, about what the different foods are, about the maracas …. [Gesturing] ‘The maracas, the maracas, above, above! … The maracas, the maracas, below, below!’Caregivers reported that they rarely interacted with their young children in the context of storytelling and reading: 18 (60.0%) and 15 (50.0%) caregivers reported that they told stories and read to children less than once a month or not at all, respectively (data not shown). In contrast, singing to children was extremely common, as the overwhelming majority of caregivers reported doing this every day, even for the youngest children Table . As one La Vaca Lola (“The Cow Lola”), El Pato Renato (“The Duck Renato”), and El Caracolito (“The Little Snail”).Participants enthusiastically mentioned a number of different songs that they sang to their children; the most popular songs were centered around animals, such as Almost every night I put some music on, and he starts to dance. He loves to dance! Like this [gesturing] with his movements. He knows how to sing … most of all he likes the songs from [TV] commercials.Several participants also mentioned singing traditional songs in Quechua (the native indigenous language of some grandparents) to their children. Other family members, including children’s older siblings, fathers, and grandmothers, also sang often. In addition, caregivers frequently played music from the radio or from their cell phones to entertain their children. A 19-year-old mother spoke of her 23-month-old child’s enthusiasm for these activities:¡Bravo!” or “¡Eso!” (“That’s it!”) in an excited tone, often accompanied by clapping.The IPCI construct of “conveys acceptance and warmth” yielded the highest average score (1.8/3). Most caregivers consistently displayed warmth through nonverbal communication such as affectionate touch and smiling at the child. Caregivers also commonly demonstrated approval through verbal feedback such as saying “No!” or “Leave it alone!”) rather than provide an explanation or learning objective. In ten cases, caregivers appeared to provide an explanation when discouraging a certain behavior; for example, in one instance when a 15-month-old boy threw a toy, her mother calmly stated, “Don’t throw that, you could hurt someone.”Observations revealed differences in the ways that caregivers communicated to redirect children’s behavior when they did something deemed inappropriate or unsafe, referred to as “interrupting behaviors” by the IPCI. The average scores for “uses restrictions/intrusions” was 0.9/3, as compared to an average score of 0.5/3 for “uses interruptions with an explanation,” reflecting that caregivers were more likely to interrupt a child’s behavior with a short command  observed children watched TV or cell phone videos for at least a portion of 30-min observations; in two of these cases, this activity occupied the majority of the observation period. In cases where participants were not directly watching TV, it often remained turned on: in 13 (44.8%) participating homes, the TV was on in the background for all 30 min of the direct observation.He woke up around 5:30 and starts watching children’s videos on the DVD. Around 7:30, he ate breakfast with his siblings, but when they have breakfast, I always turn the TV off. Around 9, I took him to the market with me … when we returned, I started the DVD again while he ate his mid-morning fruit. Then he started to play—yesterday he was playing alone during the day, but with the TV on.During the interviews, 70–80% of caregivers within each child age group reported that their children watched TV every day Table . For exacalm or quiet their children while they [the caregivers] are doing chores at home.”Daycare instructors also remarked on the large role that TV played in children’s daily lives, mentioning that they served as a means of entertainment as well as distraction. One instructor suggested that technology is used as a way to “learning how to move,” without referencing the less observable aspects of development such as cognitive and socio-emotional growth. However, other caregivers spoke of the importance of play for thinking, learning new things, or “waking up the mind.”During the interviews, caregivers displayed mixed understandings of the overall importance of play for child development. Some caregivers discussed play as having an important role for motor skills, such as walking, kicking, and “Caregivers’ ratings for the learning value of specific play-based activities ranged from 6.8  to 9.7 , out of a maximum of ten possible points. As displayed in Fig. I don’t read books to her at this time. When my [older] daughter sits down to do her homework, sometimes I show her my [older] daughter’s book … but there aren’t any books for babies in here.The high rating that caregivers assigned to reading to a child suggests that the low levels of engagement with this activity were not due to a lack of perceived value. Caregivers explained that even though they knew the merits of reading, they generally did not have books for young children at home and/or did not have enough time to read, given that their days were filled with making trips to the market, domestic responsibilities such as cooking and cleaning, and accompanying other children to and from school. As one mother of three commented,There are a ton of songs—a ton! Songs help develop everything. For example, when you sing a song about rabbits, they are skipping, jumping, running around, looking for the carrot in the song.”Caregivers on average assigned a moderately high learning value for the two most common activities of listening to music/singing and playing with balls . Interestingly, there was high variability in caregivers’ perceptions of listening to music/singing, as ratings ranged from 1 to 10; in comparison, the ratings for reading had a far smaller range of 8 to 10. Nevertheless, the participating daycare instructors unanimously spoke of the benefits of songs for learning and described their extensive use of them in the classroom. One instructor explained, “The learning value of watching TV programs or videos received an average rating of 9.0. During the interviews, some caregivers referred to “educational” videos that they played on their smartphones from YouTube or other websites. One mother of a 23-month-old boy described how these types of programs “help to develop his mind” by differentiating colors and letters, for example.In this study, we aimed to characterize the play and learning environments of young children in peri-urban Peru in order to understand potential risks to ECD and identify opportunities for intervention. Guided by the developmental niche framework, we integrated quantitative and qualitative methods to explore how physical and social settings, childcare practices, and caregiver perceptions structure children’s early experiences.Findings shed light on several aspects of children’s home environments that may not optimally support early learning and that may provide opportunities for intervention development. First, caregivers in general displayed low levels of responsive interactions in the context of play. Although most children had access to toys in their physical settings, it was rare for caregivers to engage as play partners for extended periods of time or to introduce novel activities. Our direct observations demonstrated that in many cases children played with siblings and cousins if they were present, while caregivers watched or, at times, left the room. While these types of social and free play are important, the limited opportunities for “guided play”—in which a caregiver supports the learning experience during child-led play—and scaffolding learning may adversely affect ECD –59. ImprSecond, caregivers’ limited verbal interactions with their young children suggest that the developmental niche is not particularly supportive of language formation. Our use of the IPCI tool, which focuses on caregivers’ use of “descriptive language”—rather than just the number of words spoken to a child—demonstrated the paucity of rich and varied caregiver speech among our study population . This reOpportunities for caregiver-child interactions appeared to be constrained by the regular use of TV and video programs in the home, as displayed by both our interview and observation data. Substantial evidence has demonstrated the negative developmental effects of TV-watching as well as background TV for young children, in part because caregivers are less attentive and engaged when the TV is on –71. In sCuna Más daycare instructors reported doing. Future caregiver-directed interventions should explore the potential of leveraging songs and sing-a-longs to improve communication and positive interactions in similar study settings.Importantly, our findings demonstrate the central role that music and song play in the daily lives of our study participants and suggest opportunities for leveraging songs to enrich children’s learning environments in future interventions. Music appeared to be a fundamental and joyous part of daily life, and children more frequently listened to singing and music than any other activity. Given that a handful of songs and nursery rhymes were widely known, and that an array of family members participated in singing, there is great potential to draw on these traditions to more explicitly encourage communication and positive interactions. In intervention studies conducted in developed countries, musical activities emphasizing touch, gesturing, and vocalizations have demonstrated considerable improvements in infants’ social and language skills , 76. In In addition, our data suggest several ways in which households’ socio-economic realities should be considered in the design of a future home-based ECD intervention. First, interventions should emphasize and enhance the use of everyday objects around the house as toys. Although this behavior was relatively common among our study participants, its average perceived learning value was lower than any other activity. In contrast, the use of battery-powered electronic toys received the second-highest rating for perceived learning value. The advertising and packaging of electronic toys often tout their educational benefits, yet such claims are not based on scientific evidence –79. In fFurthermore, future interventions should encourage communication in the context of caregivers’ daily commitments. Among our study participants, domestic responsibilities and time constraints led to perceptions that it was not feasible to engage with children in productive ways, such as through reading or dedicated play sessions. However, opportunities for interaction occur throughout the day. Intervention efforts targeting caregiver-child interaction should encourage caregivers to speak to their children in full sentences and identify play opportunities while doing chores in the home, going to the market, or taking part in other daily activities. The need for behavioral direction when a child acts in an unacceptable way presents further opportunities for child-directed speech. In contrast to using strict, single-word restrictions , caregivers should be encouraged to provide a learning objective  in these situations.The language environment may also be enriched through the engagement of older siblings and other household members. Future home-based interventions should advise caregivers to model descriptive language for other household members and to encourage their school-aged children to talk, play, and interact with their younger siblings, even before that sibling can speak. In addition, individuals delivering such interventions should aim to engage with as many household members as possible, given that they all contribute to the home learning environment and that there are many demands on mothers’ time. Incorporating the option of conducting weekend or evening visits would likely advance these goals.The study could have been limited by the following. First, self-reported behaviors may be subject to social desirability bias, which could have affected how caregivers discussed their perceptions or behaviors during the semi-structured interviews. Likewise, reactivity was a potential limitation related to the direct observations, such that participants may have altered their behaviors in the presence of field workers. However, these biases were likely minimized by the fact that data collectors underwent extensive training which emphasized engaging with study participants in a nonjudgmental manner and conveying that the information collected would be used to better understand community patterns, rather than to evaluate individual families. During direct observations, the child and caregiver stopped noticing and/or reacting to the camera after the first few minutes. In addition, the overall low levels of caregiver-child interactions observed were triangulated with interview data, and do not support concerns over reactivity.Second, the IPCI was an imperfect tool for assessing the quality of caregiver-child interaction. As with many observations tools, the IPCI was developed with samples of caregiver-child dyads from the U.S. and thus may face challenges when applied cross-culturally . In our Finally, our qualitatively informed sample size and the cross-sectional nature of data collection suggest that our quantitative findings should not be generalized across contexts. However, they proved sufficient for achieving our formative research goals. The strengths of our study design, including the triangulation of multiple methods and the study of two types of caregivers, ensure the validity of our findings. The immersion of several co-authors in the field site and the practice of regularly discussing emerging findings with local field workers further support the study’s credibility. In addition, although our participants came from a single, peri-urban district, this study area may be comparable to other peri-urban communities in Peru or other Latin American countries, especially with regards to cultural traditions such as music and song, as well as the growing prevalence of household possessions such as TVs and mobile phones. Thus, our findings may inform future efforts to assess and intervene on home learning environments in other similar settings.Cuna Más program, which currently provides home visiting services exclusively in the country’s rural regions and therefore has limited capacity to influence caregiver practices within peri-urban households. Future research should explore the feasibility, acceptability, and ultimately the effectiveness of such an intervention model for improving young children’s learning potential and future achievements in this setting.In this study, we have demonstrated that the application of the developmental niche framework and the integration of quantitative and qualitative methods may provide a comprehensive understanding of children’s early learning environment, and guide intervention decision-making. Formative research is essential to developing an ECD intervention that addresses local needs, leverages local strengths, and is acceptable to the target community. Our findings indicate that there is great potential for a home-based intervention focusing on singing, play-based learning, and home-made toys to improve ECD in peri-urban Lima, Peru. One possible mechanism for delivering such a service is the government’s Additional file 1.


Purpose: Periodontal disease causes tooth loss if not treated early, and advanced periodontitis can cause a decline in various oral functions. These results diminish the health-related quality of life (QOL) for various populations. Thus, early detection and management of the disease, as well as a systematic strategy for the prevention of periodontal disease, are necessary. Methods: Adults, 19 years of age or older and diagnosed with chronic gingivitis or chronic periodontitis under the ICD-10 codes, were selected to participate in the study. A total of 20 participants were informed of the purpose of the study and gave consent to participate in in-depth interviews. Results: The treatment of periodontal disease improved health-related QOL and enabled the participants to have positive dental care health behaviors. Furthermore, the participants recognized the severity of periodontal disease and the importance of dental examinations. It enabled them to be aware of the societal need for dental care awareness. Conclusions: This study was an in-depth examination of the health-related QOL of periodontal patients through a qualitative research methodology. We expect that this study will expand research on health-related QOL due to periodontal disease and revitalize the dental health system and practices. Periodontal disease is a chronic inflammatory condition of the teeth and gums, accompanied by deterioration of the surrounding connective tissue and alveolar bone, and sometimes tooth loss . In mostDisease burden created by periodontal disease has been recognized as a global challenge ,7. In KoPeriodontal disease causes tooth loss if not treated early, and advanced periodontitis can lead to a decline in chewing ability, word pronunciation, and aesthetic function. These results diminish the health-related quality of life (QOL) for various populations, particularly the elderly, adults, pregnant women, and workers ,11,12,13However, qualitative studies exploring the life experiences of periodontal patients in depth are insufficient worldwide . In termWe conducted in-depth semi-structured interviews with people living with periodontal disease to multifariously understand their health-related QOL.Adults, 19 years of age or older and diagnosed with chronic gingivitis (K05.1) or chronic periodontitis (K05.3) under the ICD-10 codes, were selected to participate in the study. Among the patients visiting the dental outpatient department in a university clinic, the study participants were chosen for our sample with the assistance of a periodontist. A total of 20 participants were informed of the purpose of the study and gave consent to participate in in-depth interviews. One participant, who was excluded after the initial interview, revealed that they had completed the periodontal disease treatment, needed only one dental exam per year, and had no health issues relating to the study. Therefore, a total of 19 patients were selected as participants. The participants were compensated with 30,000 won (about 25$) for engaging in the study. The specific sociodemographic characteristics of individual participants are shown in A designated researcher explained in detail the purpose and specific contents of the study to each participant, and in-depth interviews were conducted with those who gave their consent. In-depth interviews were conducted by two researchers individually. Both were female, one was a nurse and the other was a researcher with extensive experience in qualitative research (such as writing a dissertation for degrees). Participants recognized the interviewer’s job (nurse and researcher) and gender before conducting the in-depth interviews. The semi-structured one-on-one interviews were conducted from 7 January 2019 to 29 March 2019, and were held in the hospital conference room where the participants could talk quietly and comfortably. Each participant was interviewed once. The interview content was evaluated by one preventive medicine professor and one periodontist for appropriateness of questions prior to being used with the participants. A second review was done following the first two participant interviews to finalize the content. The specific questions in the guidelines included: (1) “Did you consistently receive and manage your dental care before your periodontal disease?”; (2) “What symptoms did you experience that made you think you had a gum problem before you came for dental treatment?”; (3) “What past lifestyle habits do you think led to your periodontal disease?”; (4) “What difficulties have you experienced since you developed periodontal disease?”; (5) “In what ways did your QOL change after developing periodontal disease (compared to before)?”; and (6) “What efforts have you made to cure your periodontal disease?”Prior to the in-depth interviews, the interviewer tried to build rapport through asking the participants about their daily lives. As a result, during the in-depth interviews, the participants naturally mentioned changes in their perceptions of dentistry, changes in QOL due to periodontal disease, and changes in their overall attitudes toward treatments for periodontal disease and others in their responses. A summary of the complete in-depth interview process is shown in The analysis team consisted of one preventive medicine specialist, one nurse, and one preventive medicine researcher. The specialist and the researcher had extensive experience in qualitative research, and all three members had studied qualitative research methods.The first analysis involved segmenting the transcribed data of the in-depth interviews into semantic units in order to understand the meaning of the participants’ responses. Two researchers led the analysis, and the whole panel applied the procedure, as agreed upon by consensus, to derive semantic units after individually analyzing the complete transcribed data analysis. Following the classification of the responses by each researcher, we cross-reviewed the categorization results of all the participants and reached consensus through extensive discussion. Finally, the categorization framework agreed upon by the two leading researchers was reviewed by a preventive medicine specialist, and data saturation was reached when no new semantic units were discovered . A summaTo ensure the validity of this study, we reviewed four criteria: truth value, applicability, consistency, and neutrality, as proposed by Guba and Lincoln . In ordeThe study was conducted after approval from the Institutional Review Board (IRB) of Ulsan A Hospital (IRB No: 2018-11-003).The life experiences of 19 participants with periodontal disease were reconstructed using in-depth interviews. A total of 899 key results were obtained and each semantic unit was categorized into one of four upper categories: “Interfering Elements for Dental Care”, “Declined Quality of Life Caused by Dental Disease”, “Satisfaction Elements after Treatment of Dental Disease”, and “Improvements for Voluntary Dental Care”. Details are shown in Most participants had been to other dentists before visiting the current university hospital. The participants have had gingival pain for numerous years and have visited dentists for the purpose of treatment. Unfortunately, the dentists at the previous clinics and hospitals did not offer sufficient explanation about their gingival condition and they made unconditional recommendations for tooth extraction. In addition, the previous dentists only provided medicine when the participants had toothaches and did not educate them on gingival care. As a result, the participants did not experience any improvement in gingival pain even after extraction and medication consumption. Thus, they decided to receive treatment from their current dentists at the periodontal department of the university hospital voluntarily or upon the recommendation of an acquaintance.“It’s painful … When I went to a general hospital, they said they (would) have to pull it out. (Your tooth?) Yeah, like they have to pull it out.”(Participant 4)“There was pus coming out of my gums. I didn’t get a precise answer when I went to that dentist, not even from another dentist.”(Participant 13)“If you go to a clinic, they only give you meds when you tell them you are in pain, no treatment like this, but just give you antibiotics and meds when you tell them it aches. So, after taking the meds, it doesn’t get better and it still wobbles … So they said I should just pull it out … Pull this one out and do  implant, pull that one out and  implant”.(Participant 2)Some participants were exposed to an environment where little to no attention was given to the needs of dental care for those who had, for example, lived in an impoverished era of war or had challenging living conditions. Nevertheless, they had never been educated on proper tooth-brushing techniques, even though they had visited a dentist since their living conditions had improved. Their lack of knowledge meant that they were unable to actively manage the periodontal disease symptoms, such as pus, swelling, and bleeding, and, as patients, they unconditionally obeyed the doctors’ orders for tooth extraction.“I left home to live by myself when I went to high school, so that’s when I started to brush my teeth … I mean, I didn’t know that I had to brush my teeth after breakfast. I was just busy eating my meal and went (to school) … I used to live in (the) countryside, so I didn’t do any dental care at all … There was  no concept of brushing.” (Participant 3)“When I brushed my teeth, there was a bit of blood quite often and (I) felt the swelling, but it didn’t really bother me too much, so I brushed it off.” (Participant 17)“At the first hospital, it was so bad that they simply told me they had to pull all my teeth out in a few years, (there was) nothing (said) about they will do such and such in order to deal with this or that in what way.” (Participant 17)The unique environment of the dentist was an obstacle that delayed the participants’ dentistry despite their experiencing symptoms of periodontal disease. They also stated that medical staff from different hospitals gave different treatment directions for the same dental condition and displayed considerable variation in the requested bills, which decreased the credibility of professionalism.“It’s scary after all, and the atmosphere, I guess? That sound and you have to like, open your mouth like this and show everything. How scary these things are (is) the biggest (reason). (Participant 16)“I am so afraid of the anesthesia, I have a phobia (about that), so I insisted that I will get it (the treatment) from a university hospital … because of the horror and fear, I couldn’t go (to the dentist) and I was under a situation where I couldn’t get an act of courage as well because I am a type that doesn’t get anesthetized that well.” (Participant 6)“I think the biggest thing is distrust. Because (you worry) if you go (to the dentist) and they might scam you when you got nothing or anything (wrong with your teeth) … You get scared when you go to a hospital because you are sick and they say “If you don’t do this or that, you will get into big trouble”, instead of saying something like “Your condition is blah blah blah and this should be treated in this particular way”. When I hear stories , it’s all different from every hospital … Frankly, I am (a) bit skeptical a lot of times.” (Participant 17)The symptoms of periodontal disease that participants experienced were primarily presence of pus, swelling of the gingiva, tooth wobbling, bleeding, halitosis, and toothache in which the gingiva felt like a sponge. These symptoms were exacerbated when they suffered from sleep deprivation or stress. They claimed that it interrupted the daily routine and one participant said that they even felt a threat to their life. “My teeth came up like this and when I chewed something on top (of my teeth), they suddenly slid down like chewing a sponge and then came back up. So, I looked at my gum, and (there was) pus, and the inflammation, it came out when you squeeze it. That’s why I went to the hospital … When I brushed my teeth, I felt pus coming out and there was also a lot of bleeding when I did the brushing.”(Participant 3)“I think sleep and gum  (are) very closely connected. On days when I can’t sleep and felt tired, my gums start to bleed immediately and the blood gushes out the next day.” (Participant 12)“It was almost to the point where I immediately went into convulsion when I hear D of the dentist. Because I had really really bad teeth or gums. I went through extreme suffering that the meaning of life, I mean I couldn’t find the meaning of it … Since I couldn’t chew on it, so I thought about death too.” (Participant 5)Working life and interpersonal relationships are exceptionally significant in the 21st century. Some participants were unable to properly manage their teeth while working and often abandoned their careers due to neglected dental care caused by frequent after-work drinking sessions. Likewise, in terms of interpersonal relations, halitosis and changes in the appearance of teeth affected by periodontal disease were factors that intimidated them.“I didn’t want to go to work. You know, when your teeth are like that, it’s hard to work … I can’t keep brushing my teeth … During work, around 10 a.m., I get a coffee break and eat some sweets, but I can’t brush my teeth right then. I can brush my teeth after lunch, but it’s hard to do it thoroughly.” (Participant 1)“Since people have been pointed out (my teeth), I automatically cover my mouth with my hands whenever I meet someone … some people said harsh things like I look fine with my closed mouth, but I look like a monster when I open my mouth.” (Participant 6)As one participant said, “I spent money, enough to buy a luxury car, to treat periodontal disease”, it is clear that dental treatment costs were overwhelming for them. However, some were not under this financial pressure, as they were satisfied with the cost-effectiveness of the treatment results. Most participants, however, were distressed by the large medical expenses of dental treatment. Notably, one participant shared their experience of receiving illegal dental treatment from a non-medical professional as they had failed to receive tooth scaling due to monetary difficulty. “Just for the sake of the smooth sailing of my treatment … I was happy. Happy, and I had faith (in the treatment).” (Participant 5)“More than 10 million won for (the treatment of) today also. I’m getting one again this time. I am getting it done again because the previous ones were really bad, and this costs about 5 million won, so you feel extreme economic stress.” (Participant 7)“The cost of expense is too high. I thought it was 2.5 million won as a total, but if the pillar (implant fixture) takes 1 million won, then it would cost me another pretty penny for visiting back and forth.” (Participant 1)The participants who went through the periodontal disease treatment experienced various changes in their daily lives. The most significant change was the improvement of QOL resulting from the relief of the periodontal disease symptoms. Specifically, they were able to eat the food they wanted, taste the flavor of food, preserve their teeth without extraction, and sleep soundly due to toothache relief. “It (the pain) suddenly decreased, (it did) not just simply decrease, but it got one in a million times smaller … If before if it was 100 points, now it rapidly decreased to 1 to 5 points.” (Participant 10)“I couldn’t have eaten well before; Now I eat well … Eating almonds was something that I couldn’t imagine, but now I can. Just as an example, I can even eat almonds.” (Participant 3)“The pain is gone, so I became 100% confident. Say, for the longest time, what would be a better hope than that we, as human beings, could all have our own teeth for the rest of our lives—it is a blessing. It is the ultimate choice to have your own teeth preserved the most for a long time. That’s why I made sure to keep this tooth. Now I live without any feeling of pain at all.” (Participant 12)The participants who felt much discomfort in their interpersonal relationships due to periodontal disease symptoms said their halitosis and aches were reduced when they were treated for periodontal disease. As a result, they stated that the sharpness of pain disappeared, and they were happy to meet and interact with people. One participant used to cover their mouth with their hands all the time due to halitosis, and when the symptoms improved, they mentioned that they were happy to be able to be interviewed and to have a big smile.“Tooth  is happiness … I have the confidence that I can speak like a normal person without pain, and I can do my job feeling better.” (Participant 5)“I tend to recommend it (the treatment) to people around me … I get to act in more natural ways. As I forced myself to cover it (my mouth) and unnaturally acted like this in the old days, now I can comfortably face people like this, talk like this, and laugh like this.” (Participant 6)Participants who have been receiving dental treatment considered dental care to be one of the five blessings  and highly essential, and recommended dental checkups to those around them. In the past, they had vague fears and low confidence in dentists, but they have started to experience high satisfaction and rate dentists as having high credibility because of the improvement of symptoms resulting from meeting their current medical practitioner and gaining understanding of their condition. They were particularly pleased with the departmentalized system and methodical treatment process as they transferred to the university hospital.“They let me preserve my entire tooth. I felt really appreciative … I could do dozens of interviews like this about teeth. I really went through a lot. But (thanks to) Dr. Lee … After that (the treatment), my world changed upside down. I really went through a lot because of my teeth”. (Participant 13)“You know, most people, they tend to have this thought of losing quite a bit with unclarity when you go to a private hospital.… We shouldn’t jump to a conclusion, and they are valuable practitioners, but that particular thought can’t escape my head. But since I’ve visited the university hospital, I think the credibility rose to 100%.” (Participant 12)“I’ve spread the words to the people around me. You can have healthy teeth by visiting the dentist regularly to get dental checkups and care … I should have done this care sooner, but it’s a pity that I couldn’t have done it.”(Participant 14)All participants voluntarily made an effort to alleviate periodontal disease symptoms. Many of them brushed their teeth three times a day by applying proper brushing techniques learned at the hospital and utilized dental aids such as dental floss and interdental toothbrushes. They were also actively recommending dental examinations not only for themselves but also for their family members based on their own periodontal disease experience. Moreover, they tried to stop smoking and abstain from drinking. Lastly, participants who were passive and depressed because of periodontal disease demonstrated positive thoughts and actively participated in the hospital treatment process.“I used to brush my teeth for less than one minute, and nowadays I’m brushing over three minutes, not just three minutes, meticulously, I mean more meticulously. It takes longer than washing my face and hair.” (Participant 10)“I like to use an interdental toothbrush more. That debris in that unreachable spot with a toothbrush is removable with an interdental toothbrush.” (Participant 11)Despite compulsory routine dental examinations, most participants did not recognize the importance of these examinations. To improve this impression, they mentioned the necessity of active promotion to raise awareness of the need for dental care through the dental examination smartphone application notification service or brochure distribution.“You can send out a reminder service to the general public so that people can easily look into it. Or distribute an information brochure—like the notification one that you get when you reach a certain age for the free health checkup—so that you can see for yourself and recognize what periodontal disease is like.”(Participant 6)The participants were not aware of the severity of periodontal disease until their symptoms became severe. In addition, even though the symptoms were acknowledged, they were inclined to endure pain without treatment. This behavior resulted from ignorance and fear of the severity of periodontal disease, which requires urgent publicity, according to the participants.“Unless it (symptom) becomes serious like mine, say you’re just a little uncomfortable, then a lot, I mean most of the people don’t go (to the dentist).… I think it will be a good idea for the Health Insurance Corporation to include a simple guidebook to help you learn about the seriousness, such as what is periodontal disease and what other organs will be affected by periodontal disease.” (Participant 6)This study analyzed the in-depth interviews of 19 patients with periodontal disease to examine the health-related QOL for those with periodontal disease in various aspects and to investigate the experiences related to periodontal disease. The analysis results were summarized into four categories: “Interfering Elements for Dental Care”, “Decreased Quality of Life Caused by Dental Disease”, “Satisfaction Elements after Treatment of Dental Disease”, and “Improvements for Voluntary Dental Care”. In detail, the patients described regretting experiences of previous dental treatment, dental care management failure due to the lack of dental-related knowledge, experiencing difficulties in daily life and social life, as well as economic burden resulting from toothaches, bleeding, halitosis, and others symptoms of periodontal disease. The treatment of periodontal disease, however, improved their health-related QOL and enabled the participants to embrace positive dental health behaviors. Furthermore, they recognized the severity of periodontal disease and the importance of dental examinations. Proper treatment enabled them to be aware of the need for a societal effort toward dental care awareness.The foremost significance of this study was that a qualitative research methodology was used to confirm the experiences of periodontal patients in health-related QOL. Periodontal disease is one of the elements that can diminish QOL as related to health. Although precedent studies have been conducted investigating health-related QOL on periodontal patients ,5,8,9,10Qualitative research, which enables interpretation of patients’ subjective experiences, can contribute to revealing overlooked or tricky details of conditions analyzed by quantitative studies by providing analyses of content from individual participant interviews. The term ‘subjective’ here indicates that the health condition is significant from patients’ perspective and that interpretation of their subjective experiences could be applied as an essential means of assessing and explaining the consequences of the disease .This qualitative study endeavored to focus on the stories of periodontal patients and thoroughly observe their experiences of life with periodontal disease. The results from this study also demonstrated that not only the treatment of periodontal disease should be highlighted, but also efforts to improve the health-related QOL for those with periodontal disease from a social perspective.Another primary aspect of this study was that the results confirmed and reiterated the need for persistent management of periodontal disease. In particular, periodontal disease patients, after vigorous periodontal treatment, should receive regular maintenance to prevent disease recurrence. For patients, who previously received only low-quality treatments without maintenance, the condition of teeth rapidly deteriorates starting around the age of 40. However, a combination of high-quality treatments and maintenance can dramatically improve the longevity of teeth. According to the literature on supportive periodontal therapy (SPT) or regular maintenance over five years, the average rate for tooth loss per patient per year is 0.01–0.31 ,19,20. SIn order to prevent periodontal disease, there needs to be emphasis on dental health as well as positive habitual behaviors for prevention and management. As most of the participants accentuated, to accomplish this idea, the importance of prevention of periodontal disease and the seriousness of the disease should be promoted. It is essential to publicize the decreased QOL caused by dental disease in terms of daily life, social life, and economic aspects. In addition, it is necessary to ensure that visits to the dentist are mandatory for preventive purposes, rather than only when symptoms occur. The greatest need regarding the current dental care system in South Korea is the need to teach and promote the practice of high-quality preventive care. The proportion of the population who regularly visit dentists for preventive purposes is 90% of those between 65 and 84 years old in Sweden. Unfortunately, in Korea, unmet needs persist, and the dental examination rate is low ,25,26,27Patients must be aware of the importance of dental maintenance or have the motivation to visit dentists to receive regular dental care. Similar to the participants in this study, patients who are consistently involved in dental care feel proud of and recognize the benefits of maintaining high levels of dental hygiene. In other words, a desire to maintain a healthy oral cavity and enjoy the process would become the driving force for long-term planning for regular visits to the dentists. Furthermore, self-care based on professional brushing training has been shown to be even more important than maintenance several times a year. Customized dental health education programs focused on individual characteristics would be more appropriate for behavioral changes than the standard ones.As the participants of this study indicated, in the past, dental care has been inconvenient; therefore, it is necessary to enhance the quality of dental care. In Korea, unmet needs are being effectively reduced as result of economic changes, such as improvements to the insurance system, but there is still distrust in the quality of medical care, especially the quality of care experienced at the clinic level of medical institutions . ParticiThe limitation of this study was that, as the participants were recruited from the general hospital , there was a limit in reflecting the experience and perception of patients who are mainly treated in dental clinics. The limitation may have resulted in a more evident demonstration of negative experiences with dental clinics. We suggest that future studies be conducted with periodontal patients who are treated by dental clinics.This study was an in-depth examination of the health-related QOL of periodontal patients through a qualitative research methodology. The experiences of periodontal disease identified by this study can not only help to assess the adequacy of the current dental health-related QOL assessment tools, but also to recognize unmet needs regarding periodontal disease and, ultimately, to raise the awareness of periodontal disease among the general public. Based on this research, we expect that research on health-related QOL on periodontal disease would expand and revitalize the dental health system and practices.


N = 17) into the social and motor skills of 5- to 9-year-old children with ASD and the impact on participation in social activities. A constant comparative method was used to generate a coherent and thematic representation of caregivers’ experiences. Thematic analysis revealed core consistencies in three areas: (1) caregivers viewed participation differently than their children; (2) participation levels of children with ASD are context specific; (3) challenges with social skills were perceived to present a greater obstacle to participation than motor skills. Overall, the notion that ASD is a heterogeneous disorder was made very apparent. Although caregivers believe there to be immense value in current treatment and intervention options, the availability and access to such options was a major barrier. The effectiveness of intervention programming designed to increase participation is contingent on understanding factors that affect participation. Implications concerning caregivers’ perspectives are discussed.Participation is a key aspect of quality of life and is essential for children’s well-being, yet children with disabilities are at risk for lower participation in social activities. For children with autism spectrum disorder (ASD), social skills may present a significant obstacle for participation in activities of daily life; however, motor skill development may also serve an important contributing factor. Nevertheless, the link between social and motor skills in children with ASD is not fully understood. The current research implemented semistructured interviews to garner descriptive insights from caregivers ( Children are socially occupied beings living in a social world ; howeverAtypical social development, characterized by language deficits and problems with pragmatic aspects of language, is a defining characteristic of ASD . ChallenWhile diagnostic features manifest differently and present unique challenges for each child, it is generally understood that characteristics of ASD have a significant impact on socialization and involvement within all aspects of life. Decreased participation levels and less variety in activities are reported among children with ASD compared to both typically developing children and children with other developmental disabilities . For schAlthough social skills are typically regarded as a significant concern for children with ASD, motor deficits have also been acknowledged. Fine and gross motor challenges and issues with balance and coordination have been reported . It is eA review of motor abilities in ASD posted the question of “how motor difficulties relate to social difficulties – are they independent or do underlying motor issues cause social characteristics?” , p. 340.Overall, despite research showing that social development and motor development are interdependent  and thatThere is a clear gap in the literature regarding how motor challenges, and the interplay between motor and social deficits, affect daily participation among children with ASD at home, school, and in the community. Substantial literature has examined the extent of participation, and considerable work has focused on developing and implementing interventions to increase participation; however, individual perspectives and experiences are not typically considered in the participation literature . As careAfter receiving clearance from the institutional research ethics board, the second author contacted child development centers and organizations across Southwestern Ontario to request permission to purposefully recruit participants. The researcher had no prior roles or relationships with any of the organizations or potential participants. Site-specific approvals were forwarded to the institutional research ethics board noting which specific recruitment method  would be employed. To ensure confidentiality, the research team did not have access to client contact information; therefore, recruitment information was shared with clients who met the inclusion/exclusion criteria  on behalf of the researchers. Families who were interested in the research contacted the second author to obtain additional information and schedule data collection.This study is part of a larger mixed-methods project. Families also participated in the quantitative portion of the project, which is examining relationships between motor function, social function, and participation among children with ASD. In qualitative research, both “participants’ and researchers’ interpretations of phenomena are taken into account in the process of analysis” , p. 7. AN = 17) included 14 mothers, 2 fathers, and 1 grandmother  of children between the ages 5–9 years . No other sociodemographic information was collected from caregivers, which can be considered a limitation of this research. To ensure interviewer consistency, the second author collected all data through a combination of in-laboratory (n = 2), at-home (n = 10), and phone-based (n = 5) interviews, according to participant preference. As a thank-you for participating in the interview, a $10 gift card to a local bookstore was provided.The current study  and experiences obtaining/receiving a diagnosis of ASD . Participants were also asked questions about current and past involvement in therapies and/or interventions . These questions were designed to build rapport and encourage a conversational flow.International Classification of Functioning, Disability, and Health definition of “involvement in a life situation”  were removed to help with readability and clarity of ideas within the article. Interviews were thematically analyzed by the second author using NVivo12 . Transcripts were examined to garner a sense of the data and enable an open-coding process. The following questions , p. 78 wThematic analysis revealed core consistencies in the data: (1) caregivers viewed participation differently than their children; (2) participation levels of children with ASD are context specific; (3) challenges with social skills were perceived to present a greater obstacle to participation than motor skills. The notion that ASD is a heterogeneous disorder was made very apparent. For example:DSM exists but even within that there are so many variants (P11).It’s not a joke, but it kind of sounds funny when you say it, you know, that when you meet one child with autism, you’ve met one child with autism because there’s no such thing as a standard. Like, the The following outlines overarching themes and highlights respective subthemes that emerged from the interviews, while describing similarities and differences in experiences. Representative quotations are included to help illustrate caregivers’ perspectives.International Classification of Functioning, Disability, and Health definition .Generally, caregivers acknowledged the potential disconnect between personal perspectives of participation and how their children with ASD may view and thus experience participation.Children were described as having varied thresholds for participation in group and social activities:I mean it’s always a great benefit to try and get him involved, but you know with these kids, we generally try to let them go at their own pace. You only want to push them so hard; you don’t want them to be completely turned off (P1).One mother described how grateful she was that her child enjoyed social activities and sought out opportunities to engage with other children: “It’s very rare… I mean he’s a social rock star” (P2). Some of the children were willing to try group activities, but not participate for the entire duration: “After 10 min, he’s like okay, that’s enough, that was fun, that fills my bucket, and it’s over for me” (P8). Others had a general preference for individual or one-on-one activities and thus avoid or resist group activities all together. For example, one caregiver expressed, with reference to preferred activities: “I mean, his favorite, I would have to say, anything he can do by himself” (P16).Related to the threshold, caregivers highlighted factors that generally influence participation. Managing the physical and sensory elements of the environment was of utmost importance: “If there’s too much going on, it’s harder to get him engaged. Just all the noises. If there’s too much noise, or there’s too many lights or things that will distract him, that makes it difficult” (P9). Likewise, caregivers expressed the need to ensure structure, consistency, and predictability to promote success: “If they veer from any sort of plan it’s a no” (P10). Descriptions also centered around children’s motivation, confidence, and competence: “if he feels like, he can’t do something he won’t participate” (P1). Some caregivers discussed a complete lack of social motivation. For others, lower levels of perceived motor competence resulted in decreased self-confidence, which ultimately discouraged participation. Some children were thus described as unwilling to try new activities – or would try, but, after failing once, not trying again.An important point of consideration was the notion of whom children participate with. Whereas some children preferred to engage with peers of the same age, others were better able to connect with younger children. For example, one caregiver expressed: “…they are significantly younger, but he tends to do very well with them because they play at his level, kind of thing” (P11). Generally, tendencies reflected the desire for interaction with individuals at or around the same perceived “level” of functioning, or what was perceived by the child as the same or most similar “level” of functioning. This often presented quite the challenge:It’s hard to find other kids that are a similar level that he is, and then his patience with people is very little. He’s very much like, “Well, this kid doesn’t even talk,” and well, he doesn’t talk, but they’re trying to teach him, he’s not good at it. He gets discouraged by other kids really easily, and I think that limits his participation (P8).Some children with ASD did not fare well with their peers; therefore, caregivers expressed a preference for interaction with adults.Whereas the previous theme depicted how children with ASD view participation, data also revealed differences in children’s participation levels at home, school, and in the community. While generally described as lower than expected, caregiver agreed that the level of participation “depends upon the situation” (P11). With the greatest participation at home and least in the community, caregivers described how perceived comfort levels both promote and restrict participation: “At home, he would participate if we were having a family game, doing something as a family, he would participate. But home is his comfort. Anything outside the home would be the least amount possible” (P13). The discussions surrounded the comfort levels of not only the child, but also the broader family unit. Some families were eager to explore new activities and social environments: “you know we’re not the type of parents that sit back and go like whatever… we try to get him involved in everything that is going on” (P1). In comparison, others were more hesitant to try things outside their comfort zones. As a result, some caregivers described a preference to engage in programming designed exclusively for children with special needs or ASD, whereas others felt it was extremely important to enroll their children with typically developing peers as a foundation for the future: “But at the same time I’m like, at some point he’s gotta do stuff, he’s gonna have to go to work, he’s going to have to do those things” (P8). Children represented in the current study were quite young, with an average age of approximately 7 years, yet caregivers were cognizant of how decisions regarding activity selection, and participation opportunities, in the short-term would affect their children in the long run.Considering the young age range of child participants, many had recently transitioned into school; therefore, school participation was a key topic of discussion. At the time data were collected, all children were enrolled full-time at publicly funded elementary schools in Ontario, Canada; however, participants acknowledged periods where children were attending only part-time and/or required extra days off, primarily due to behavioral issues. At school, educational assistants (EAs) help to promote participation in regular classrooms, while also facilitating the support necessary for each Individual Education Plan . As suchIt’s a lot of 1-on-1. But, he’s getting better with trying to figure out how to do things as a group… Now he can go out for recess with the other children, and yes, he still has an EA, but the EA can stand back and let him try to play with the other kids (P16).Central to all discussions was appreciation for a supportive school environment. Caregivers discussed cultures of acceptance and inclusive climates: “At school, they put up the autism flag last year. And he was the one that raised it” (P15). For most of the families, school was described as the place for regular and consistent support. In addition to full-time teachers and EAs, caregivers described outside specialists  visiting classrooms to address specific concerns , with positive transfer from school to both home and community-based participation.Notwithstanding the previous, the need for additional support outside of school was expressed. Acknowledging the immense value of treatment and intervention options, availability and access were described as a major barrier:“Everything right now is on hold. We’re on a waiting list. He’s got an iPad at school, but I don’t know who programs or runs that. That doesn’t come home. Yeah, we’re on 3 different waiting lists for speech, for special services at home, for Respite for him, and the [provincial organization] whatever they’re supposed to do. So, we’re winging it” (P5).Wait lists and children aging out of eligibility before being able to access services were a key area of concern. Caregivers described the reliance on short bouts of therapy and/or interventions to help guide individual and family oriented practices:“We try. We try new things. I’ll get an idea from somewhere and be like, you know, we’re not going to wait for this to come to therapy, let’s try something different… I just – I can’t afford – I don’t have the money myself to pay for anything, and even – even with the ABA and the funding option, because they don’t give you what it actually costs to go private, they only give you a certain amount of money. So, I can’t do it; I have to wait for government funding” (P16).For some families, community activities  supplemented or complemented school-based programming. For others, activities were viewed as extracurricular activities separate from therapies and/or interventions. Regardless of intent, caregivers admitted they were doing what was feasible with the time and resources available to their families, but would like to see their children participate more to encourage continued development in all areas, including social and motor skills.Many caregivers spoke to their children’s strengths in gross motor proficiency; therefore, such skills were not of major concern. Activities such as jumping on the trampoline, running, climbing, and other “big” movements were favored and often described as an outlet for children. That said, caregivers acknowledged that motor skills were indeed delayed in comparison to typically developing children, describing specific challenges with balance and coordination: “it’s kind of clunky, it’s not as fluid as the kids his age” (P11). Another expressed, “He’s really clumsy; he bumps into walls” (P5). In contrast to gross motor skills, caregivers agreed fine motor skills present daily challenges for children. The two aspects described most frequently were self-care  and classroom work . As one caregiver described: “I don’t worry about him and mobility until it comes to the fine things. You know, I still have to brush his teeth. Wash his hair. Yeah, there’s stuff that kids his age can do that he just – he’s not there yet” (P16). Another expressed:“He still has issues with writing, he’s getting it, but it’s definitely been a very long process. I, as a parent, can make out what he writes most of the time but new people, they definitely have to question, you know, what he’s written and that sort of stuff, so still can’t stay in the lines when it comes to coloring and all that fun stuff” (P1).In conjunction with descriptions of challenges with fine motor skills, caregivers described challenges related to cognitive elements of motor control: “you know the part of her motor abilities that are more mental, that you can’t see” (P3). That said, parents acknowledged improvement with practice: “They’re getting better. The more he practices, the better he is getting” (P14).Although many important points about motor function were raised, caregivers were generally more concerned with and thus emphasized to a greater extent the influence of social challenges in daily life. Caregivers emphasized that their children were either hypoaware or hyperaware of others. Hyperawareness of others’ non-verbal cues, attitudes, and expressions often resulted in social hesitation and avoidance; therefore, caregivers emphasized the need to prepare children in advance for new activities and upcoming events:“He’s somewhat hesitant, but once you kind of get to his level, I mean, you saw. We’ve been warming up for the last 2 weeks that, you know, someone was coming for science, and that was exciting for him, but if you’d just shown up at the front door he would have been, you know, behind a chair, underneath an adult, not talking, wouldn’t even look at you” (P11).Likewise, once a relationship was severed, it was very difficult to mend. In contrast, children who were described as hypoaware often appeared more social on the surface, albeit often lacking the skills to interpret, reciprocate, and respond to social behaviors: “He just kind of barrels into a house or barrels into a situation, and it’s like come what may. You know, if it’s good, it’s good, if it’s bad, it’s bad” (P12). With this lack of understanding, children were often unaware of teasing or mistakenly perceived remarks or actions as offensive.Communication and self-expression were also a significant consideration. For caregivers of verbal children, conversation was often interpreted at face value, and remarks were often inappropriate, therefore presenting obstacles for participation in group and social activities:“In hockey it’s good because they have mouth guards. So, he would chirp and scream at other kids and get upset, but people can’t hear him cuz the mouth guards, right? So, that’s a really nuance thing, but it was a saving grace. Whereas anything like basketball, soccer, where they can hear him, he’ll say things to kids that are very discouraging. So, it’s hard because you want him to be physically able to participate in things, but, the social aspect of losing, or his perception of the rules, right? It’s not a good match. It’s very hard to be able to find other activities that he would be able to participate in” (P8).In comparison, with people generally unwilling or unsure of how to engage with non-verbal children: “He’s non-verbal… He does love playing with people, but the people that we know, they don’t stick around when there’s no communication. They look around and go; maybe we should just leave him alone because it’s better that way” (P10). Caregivers empathized with how frustrating it must be to lack the ability to express oneself and contribute to conversation in a typical manner and therefore understood the impact on participation levels.Overall, the current study aimed to explore caregivers’ perspectives of social and motor skills of their children with ASD and how they influence participation. More specifically, we sought to determine whether caregivers were primarily concerned with their child’s motor skills, social skills, or recognized the bidirectional relationship between motor and social skills. As our semistructured interview guide included a range of open discussion points, caregivers had the freedom to elaborate on their own experiences. We thus garnered descriptive insight into unique profiles of children and their engagement in activities of daily life. We identified three overarching themes from the data: (1) caregivers viewed participation differently than their children; (2) participation levels of children with ASD are context specific; (3) challenges with social skills were perceived to present a greater obstacle to participation than motor skills. Although each theme was largely cohesive, caregivers’ experiences with their children did indeed reflect the spectrum that is inherent to autism. As recent literature has focused on elucidating this heterogeneity e.g., , the preCaregivers acknowledged that their children’s ideas around participation may indeed be different from their own perceptions and societal norms. As such, the assumption that more participation is better  may not Participation has been described by individuals with disabilities as “a complex and multidimensional construct. There is no gold standard for ideal or optimal participation” , p. 1454Recent literature  revealedCaregivers also discussed the role of motivation, competence, and confidence  in the tConnected with this were caregivers’ descriptions of whom children participate with. Although a range of age preferences were discussed, the consensus was that children with ASD strive to engage with individuals whom they perceive to be at the same “level.” As parents agreed this presents quite the obstacle in daily life, it is not surprising that anxiety and fear related to peer relationships are prevalent in ASD . As a reRelated to the notion of different perspectives of participation, caregivers described varying levels of participant among their children with ASD at home, school, and in the community. Consistent with quantitative reports of participation frequency and involvement , caregivWhile research has reported both stable patterns and decreases in participation over time , caregivConcurrent with a recent perspective piece , childreWhen describing motor function, caregivers were primarily concerned with fine motor challenges that impact their children’s self-care and school performance . StrengtOverall, the current research adds descriptive findings to complement a recent perspective piece on the interdependence of social and motor skills and impact on participation . Three oThe datasets generated for this article will not be made publicly available because ethics approval was granted to share representative quotes from thematic analysis, not the full interviews. Requests to access the datasets should be directed to the corresponding author.The studies involving human participants were reviewed and approved by the University of Windsor REB. The patients/participants provided their written informed consent to participate in this study.SS was responsible for the study design, participant recruitment, data collection, thematic analysis, interpretation of results, and preparing the manuscript for submission. PR transcribed all the qualitative interviews, and was involved with thematic analysis, interpretation of results, and preparing the manuscript for submission. All authors contributed to the article and approved the submitted version.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.


Cannabis is one of the most widely used substances among vulnerable young people (<26 years of age) experiencing street entrenchment. Although previous research has documented the role cannabis can play in harm reduction, substance use and mental health treatment and pain management, this research has predominantly been quantitative and focused on adult drug-using populations. Little qualitative work has examined how young people who use drugs understand, experience, and engage with cannabis in the context of street entrenchment and drug use trajectories that include the use of other substances such as alcohol, opioids and crystal methamphetamine (meth).Semi-structured, in-depth qualitative interviews were conducted between 2017 and 2019 with 56 young people recruited from a cohort of street-involved youth in Vancouver, Canada. We also conducted 13 interviews with 12 youth-focused care providers across the same time period. Interview data were triangulated by drawing on the findings of a program of anthropological research conducted by the senior author since 2008. Interviews were transcribed verbatim and thematic analysis was conducted.The vast majority of study participants engaged in daily, intensive cannabis use at the same time as they cycled on and off other substances that were perceived as much more harmful . While most participants derived significant pleasure from the use of cannabis, no participants in our study described using cannabis for purely recreational purposes. A number of participants explicitly framed cannabis as a form of mental health and substance use treatment that was more effective and “healthier” than the long-term use of psychopharmaceuticals and medication-assisted substance use treatment . Cannabis use was also understood to ameliorate some of the harms of, or even facilitate transitions out of, periods of street-based homelessness. While the majority of our participants highlighted the positive effects of regular cannabis consumption, some described how intensive cannabis use could generate significant harms.In the context of the recent legalization of non-medical cannabis use in Canada and amid ongoing overdose and housing crises, it is imperative that future policy and programming interventions and provider education and training be responsive to the ways in which vulnerable youth in our setting are actively using cannabis to navigate their everyday lives and healthcare needs. In Canada, it is estimated that there are between 35,000 and 45,000 young people who are living without a stable or safe residence . In VancAmid intersecting crises of homelessness and climbing overdose rates, Vancouver continues to be recognized as an international leader in the rapid implementation of numerous interventions to reduce drug-related harms. In the downtown core, services such as needle distribution programs, supervised injection facilities and overdose prevention sites, the widespread distribution of take-home naloxone kits and the availability of opioid agonist therapies  have been paramount in reducing drug-related harms , 12, 13.And yet, in this setting service providers continue to struggle to connect young people, and particularly youth experiencing street entrenchment, to care. A largely quantitative body of research from settings across North America has highlighted various barriers to accessing care among vulnerable youth, including long wait times, age restrictions, a lack of trained providers and access to pharmacotherapies, and experiences of discrimination on the basis of gender, race and sexuality –19. For Previous work by our team in Greater Vancouver has demonstrated that one of the emic strategies street entrenched young people may employ to independently mediate their drug use is the use of one substance to transition away from another. For example, many youth in our setting begin using crystal methamphetamine (meth) in order to reduce or eliminate what they view as increasingly problematic crack cocaine and opioid use . PrelimiIn Canada, cannabis is one of the most widely used substances, particularly among young people. Health Canada reports that cannabis use among youth ages 16 to 25 is over two times greater than among adults , and UNISeventy-eight semi-structured, in-depth qualitative interviews were conducted from March 2017 to August 2019 with 56 young people between the ages of 16 and 26 (31 youth completed one or more follow up interviews). Youth were recruited from the At-Risk Youth Study (ARYS), a prospective cohort of over 1,000 street entrenched young people who use drugs that has been described in detail elsewhere . We alsoInterviews were undertaken by a medical anthropologist (DF) and a research coordinator (MT) trained in qualitative interviewing and facilitated with semi-structured interview guides. Interviews with youth were designed to elicit broad discussions of their substance use and care trajectories, including experiences with and perspectives on cannabis use. For interviews with providers, we sought to elicit their experiences with and perspectives on the rapidly transforming substance use care landscape in Vancouver. While we did not explicitly raise cannabis use among street entrenched youth during these provider interviews, this emerged as an important theme in several conversations. All study participants provided their written informed consent, and youth participants were compensated with a $30 honorarium for their time. We received ethical approval from the University of British Columbia/Providence Health Care Behavioral Research Ethics Board to recruit and interview young people 14 years of age and older as emancipated minors, and therefore no parental or guardian consent was required for any of our youth participants.Interview findings and emerging analyses for this study were triangulated by drawing on the findings of a larger program of anthropological research conducted by the senior author since early 2008 with street entrenched youth and their providers in Greater Vancouver. This research program has included a focus on tracing young people’s substance use and care trajectories across time and place, and hundreds of hours of fieldwork in the settings of youth’s everyday lives, including the places where they sleep, eat, socialize, work, and access services and systems.As is common in qualitative and anthropological approaches, data collection and analyses occurred concurrently as the study progressed. Interviews were transcribed verbatim, anonymized, and checked for accuracy. ATLAS.TI software was used to code and manage the data. An initial codebook was generated by DF that captured broad emergent themes and analytic categories (e.g. “experiences with cannabis”). Subsequent fieldwork and in-depth interviews were used by the study team to refine the codebook through the addition of new codes . Over the study period, evolving interpretations of the data were discussed with young people in the field by DF, and more formally during subsequent in-depth interviews conducted by DF and MT. In addition, the research team discussed the content of interviews and fieldnotes throughout the data collection and analysis processes. Two Youth Peer Research Associates (BH and SN) assisted with member checking emerging findings and final analyses. We use narrative excerpts from specific interviews and fieldwork encounters to highlight themes we identified across interview accounts and fieldnotes. All names appearing below are pseudonyms.Youth interview participants included 30 young men, 21 young women, and five non-binary individuals (gender was self-identified by youth). The median age of youth participants was 21. Thirty-one participants self-identified as White, eight self-identified as Indigenous, two self-identified as African Canadian, one self-identified as Middle Eastern, one self-identified as Asian, 11 self-identified as being of mixed ethnicity, and two did not want to identify their race or ethnicity. Consistent with quantitative research from our setting , the vasWhile most participants derived significant pleasure from the use of cannabis, we noted that no participants in our study described using cannabis for purely recreational purposes. Among participants, cannabis’ pleasurable euphoric effects were frequently cited as relieving longstanding mental and physical health issues–most notably, depression, anxiety, attention deficit hyperactivity disorder (ADHD) and chronic pain. Twenty one-year-old Blake was using meth daily at the time of his interview. As they described:Weed is very medicinal–it’s the best medication there is. It cures my hyperactivity. I also have scoliosis, and my back pain stops, too, when I use it. (Indigenous non-binary person)A number of youth believed strongly that regular cannabis use was preferable to the long term use of the various psychopharmaceuticals they were regularly prescribed for mental health issues such as depression and anxiety. Twenty-four-year-old Zack had recently stopped using fentanyl and meth at the time of his interview (see below). He described how cannabidiol (CBD) pills would eventually allow him to stop taking psychopharmaceuticals for anxiety and depression:I’m taking Gabapentin and, uh, Trazodone. I’ve got anxiety and depression, but I don’t wanna be taking pills my whole life. So I’ve been buying the CBD pills a lot. It’s healthier. Beyond the management of mental and physical health issues, a few young people also described using cannabis to ameliorate some of the harms of street-based homelessness. Nineteen-year-old Jeremiah had recently undergone treatment for cocaine use at the time of his interview. He had been struggling with multiple periods of homelessness and unstable housing during the past year. Jeremiah explained:I’ve been sleeping on the beach for three months. I smoke a lot of weed. And then I don’t have the sadness. My environment is still sad, but smoking weed helps me a lot. That’s very, like, therapeutic for me. And it just lets me, like, keep going. Other youth connected cannabis use to periods of relative stability in their lives, during which they were able to transition out of homelessness and problematic substance use. Twenty-one-year-old Carla was using meth daily at the time of her interview in 2018. Reflecting on the previous year, she described how smoking cannabis allowed her to move out of daily binge alcohol use and homelessness and into a period of relative stability in her life:There was a period of time there when I was sober for about–almost 5 months. I still had cravings [for alcohol] but it wasn’t so bad because I was using pot to wean myself off of it. At least I had something, and then [on pot], you know, I’m not flailing off and not remembering anything and a week later I’m in a ditch somewhere–like, have none of my belongings, don’t know what city I’m in. Eventually I was able to maintain a job, I was able to move back with my dad. It’s much better, smoking pot, eating food, going to bed. Like, I just get too relaxed and lazy to want to do anything else. Although we did not explicitly question young people about the “gateway drug” hypothesis, they often questioned this argument, describing how cannabis use was not a route to “harder drugs” in their context. When engaging with this debate, youth were not so much questioning the order in which their substance use had initially progressed  as they were questioning the idea that cannabis use propelled them towards greater drug-related harms. Rather, in the context of broader substance use trajectories that included the intensive use of opioids, meth and alcohol, many young people described cannabis as a means of intermittently reducing their use of or eliminating these more problematic forms of substance use.Twenty-one-year-old Gordy was injecting heroin and meth at the time of his interview and indicated that he had no intention of quitting either at that time. However, he did describe how smoking cannabis was an important form of “harm reduction” for when he was trying to use less heroin because it staved off opioid withdrawal:It’s like harm reduction for me. When I’m sick and I have to have down [heroin], I could take a few bong rips instead and I’m, like, ‘Okay, I’m good.’ If I smoke weed all day, like, I might not even notice that, like, there’s no heroin in me. Other participants framed cannabis more explicitly as a form of “treatment.” They described periods of time when they had used cannabis to carefully “taper” their use of more harmful substances over the course of several weeks or even months, describing, like Gordy, how cannabis reduced the severity of withdrawal symptoms, and also prevented relapse by satisfying cravings. Zack described using a combination of methadone and cannabis to eliminate daily injection fentanyl and meth use . It is I don’t wanna [inject meth and heroin] anymore. As soon as I think about it–like, right now, I’m kind of getting a craving for it. But right after [this interview], I’m not gonna go out and pick any up, I’m gonna go to my dispensary and pick up a joint and I’ll be all fine. The methadone and the weed just, like, connects together, and then all the cravings are gone. Twenty-year-old Justin had recently stopped using heroin and meth at the time of his interview. He reflected:I’m pretty baked, like, 100 percent of the day every day. Weed blocks the thought of doing dope. Instead of being like, oh, why don’t I just do dope? I don’t think about anything really when I’m high on weed. I’m kind of still taking my Suboxone, but the Suboxone doesn’t really do anything ‘cause the weed just blocks, like, the thought of doing dope. Unlike Zack, who described how cannabis and methadone “connected together” to eliminate cravings, Justin and a number of other youth described how cannabis was far more effective than OAT for the treatment of substance use disorders. Young people frequently described using cannabis to taper off of OAT, or indicated that they planned to pursue the strategy of using cannabis to get off OAT after they had undergone treatment. Several youth argued that cannabis should be an official part of the substance use treatment system. Carla explained:Like, I always believed, like, when I was in treatment–they should dispense pot to people here, you know? Like, people can’t just suddenly not have anything. You still need something to just kind of fucking just take the edge off and calm your nerves. And, like, it–there’s no harm in pot. Indeed, a number of youth indicated that they avoided going to treatment because it would mean giving up cannabis. Twenty-year-old Devon was using meth and heroin at the time of their interview. They reflected:I haven’t considered going to residential treatment because I can’t use weed there, you know? Because, like, that’s a medicine for me. It’s not a drug. So, like, that’s been a huge barrier in my getting clean and sober. It’s a challenge for those of us who use [weed] medically. (Indigenous non-binary person)Some healthcare providers and treatment and recovery settings in Vancouver have been working with vulnerable young people to determine how to incorporate cannabis into substance use and mental and physical health treatment plans. A small number of youth, including Zack, described staying at a recovery house where they were allowed to smoke cannabis, so long as they were discrete about it. Several of the providers we interviewed highlighted the importance of engaging in conversations with youth about their cannabis use and discussing both the potential risks and benefits of cannabis in the context of physical and mental health and substance use issues. Providers emphasized the particular significance of these conversations in the context of the current overdose crisis. For example, one clinical addictions counsellor described:We’re imposing beliefs, values and judgements instead of listening to the youth when they say ‘Well, when I smoke pot I don’t feel suicidal.’ I actually have a client right now who has a family member who’s saying, ‘You can’t smoke pot.’ So [the young person] stopped smoking pot and became more suicidal and is now in the hospital. And then another service provider said to them, ‘Well, from a harm reduction perspective, you know, we want you alive so if you need to smoke a little pot to help you not experience suicidal ideation then, you know, let’s do that.’ It’s complex, right? Especially right now, when kids are dying [from overdoses]. So I do a little bit of education with families: ‘This is why we say smoke pot if you need to, because we want the person alive and if that means they need to smoke some pot, fine. For right now, we want them alive so that we can work on the other issues that they want to work on.’While the majority of our participants emphasized the positive effects of cannabis consumption, a smaller number of participants did highlight negative aspects of cannabis use. Unlike those who argued against a sort of “gateway drug” effect in the context of substance use trajectories that included the use of alcohol, meth and opioids, a few youth indicated that using cannabis could trigger cravings for the more intense high that accompanies these “harder” forms of substance use. For example, 24-year-old Marcus stated: “If I pick up weed I will pick up crystal meth, benzos–I know what can happen” .A small number of youth described developing a problematic dependence on cannabis, leading to various health and social harms. Nineteen-year-old Ana was using heroin and meth at the time of her interview. She reflected:A lot of people say, like, you can’t get addicted to smoking weed. Like, you can. For me, it became, like, daily, habitual. I had to have it to cope, and if I didn’t have it, I felt irritable. I felt like something wasn’t right. I always wanted to be high. It became this thing where, like, I would only smoke it out of a bong with tobacco [known as doing “poppers”]. And I would start getting really sick from it. It was a really bad addiction to poppers. And I remember this one time last summer, I took a popper and I seizured out. The hospital said it was a drug-induced seizure. Twenty-four-year-old Mason was injecting morphine daily at the time of his interview. He described how a previous addiction to cannabis had also caused him significant harm:I used to puke up stomach acid all the time when I smoked pot. I’d just smoke and smoke and starve, too, sometimes. Like instead of buying food I’d buy $30 worth of weed and just get through [my stomach problems] with weed. Mason eventually turned to methadone and morphine to help get himself off cannabis:As soon as I started doing morphine [the stomach pains from smoking too much cannabis and not eating] went away. I actually lied and said I did heroin and then I got on methadone just to get off the pot use. That’s how bad it got. I wanted something to help me with the pot use.Mason and other youth reflected on how seeking treatment for cannabis use could be challenging in the Vancouver context, where many people do not view cannabis as a “real drug” or cannabis dependence as a “real thing”:People treated me like total crap when I was [in residential treatment] for pot. I mean, like, total shit. It was like, oh, well, that’s not a drug. You don’t need to be in treatment. And when I went there for morphine and shit they were just kind of like, whoa .The providers we interviewed generally acknowledged both the potential benefits and harms of cannabis use among youth experiencing street entrenchment, emphasizing the importance of remaining unbiased during conversations with young people about their cannabis. As one counsellor reflected:I think it’s important to have an open conversation with people about what pot means to them, and I think all service providers need to be having these conversations. We need to be looking at the pros and cons and asking young people, ‘How is it for you? You’re smoking pot, are you okay with that, or do you want to make some changes?’ And I have clients who will say, ‘Well, you know, everybody’s saying that pot’s great and everything but it’s really harmed me and I want to stop using.’ And if that’s what they tell me then I work with them to help them stop using or cut down, set some goals, and then talk about what happens once they stop using. How is that gonna affect you and how can we work with that? Because there are going to be consequences to not using anymore, especially if you’ve been using to self-medicate. But if they say, ‘Hey, pot is what keeps me sane’ it’s like, okay, then let’s work on other stuff.While some young people in our setting identified negative effects of regular cannabis use, our findings also underscore the therapeutic value of cannabis among many youth in the context of street entrenchment and substance use trajectories that include the intensive use of alcohol, opioids and meth. Despite reasonable access to health and substance use services in a setting like downtown Vancouver, many vulnerable youth instead elect to use cannabis to mediate substance use and mental and physical health issues, as well as to ameliorate some of the harms of, or even transition out of, periods of street-based homelessness. A number of participants explicitly framed cannabis as an effective form of mental health and substance use treatment. Participants used cannabis to reduce or achieve abstinence from what they perceived as more dangerous forms of substance use, and to transition away from harmful routes of administration such as injection drug use. They also used cannabis to transition away from psychopharmaceuticals and medication-assisted substance use treatment  that were generally viewed as less effective and “healthy” in the long term. This is consistent with other work by our team  which haOur findings are consistent with previous studies focused on adult populations which demonstrate that cannabis use can reduce the frequency of prescription , 43 and Our findings also shed additional light on a recent quantitative study by Reddon and colleagues, which found a negative association between frequent cannabis use and initiating injection drug use among street entrenched young people in Vancouver . Taken tThe use of cannabis as a form of intermittent harm reduction and treatment among many of our participants may reflect ongoing barriers to professional care among street entrenched young people in our setting. Previous research, including our own, has highlighted the numerous challenges vulnerable youth face when attempting to access substance use care, including the reluctance of many providers to provide OAT to youth , the phyThe youth who participated in this study cycled in and out of forms of substance use  that generally pose more immediate risks than daily, intensive cannabis use. However, some of our youth participants did emphasize the negative effects of intensive cannabis use. More research is needed to develop a clear picture of both the positive and negative effects of cannabis use among this population. Conducting research on cannabis, particularly with respect to its therapeutic possibilities among youth, is challenging for a variety of reasons , 58. ConIn conclusion, our findings highlight the potential benefits and harms of cannabis use among young people in the context of street entrenchment and substance use trajectories that include the intensive use of alcohol, opioids and meth. While a small number of youth spoke to the potential dangers of cannabis use, the majority emphasized cannabis as a tool that allowed them to transition away from what they viewed as more problematic forms of drug use for periods of time, and to relieve longstanding physical and mental health issues. Particularly in the context of the recent legalization of non-medical cannabis use in Canada and amid ongoing overdose and housing crises, it is imperative that future policy and programming interventions and provider education and training be responsive to the ways in which youth in our setting are actively using cannabis to navigate their everyday lives and healthcare needs.