ARTS & CULTURE
How “young adult” fiction blossomed with teenage culture in america.
In the ‘60s and ‘70s, books like The Outsiders and The Chocolate War told stories that dealt with complex emotions and social realities
Michael Cart, Zócalo Public Square
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Like jazz, the Broadway musical, and the foot-long hot dog, young adult literature is an American gift to the world, an innovative, groundbreaking genre that I’ve been following closely for more than 30 years. Targeted at readers 12 to 18 years old, it sprang into being near the end of the turbulent decade of the 1960s—in 1967, to be specific, a year that saw the publication of two seminal novels for young readers: S. E. Hinton’s The Outsiders and Robert Lipsyte’s The Contender .
Hinton and Lipsyte clearly were writing a new kind of novel for young adults—one of unsparing contemporary realism that met a need articulated by Hinton herself in a passionate article in The New York Times Book Review published on August 27, 1967. Here’s what she wrote:
Teenagers today want to read about teenagers today. The world is changing, yet the authors of books for teen-agers are still 15 years behind the times. In the fiction they write, romance is still the most popular theme with a horse and the girl who loved it coming in a close second. Nowhere is the drive-in social jungle mentioned. In short, where is the reality?
The answer, of course, was to be found in the pages of her novel. The Outsiders had a mean-streets setting and dealt with urban warfare between teenage gang members, dubbed, respectively, the Greasers and the Socs. Hinton’s mean streets were in her hometown of Tulsa, Oklahoma; those of her equally innovative fellow author Robert Lipsyte were in New York City. His 1967 novel The Contender featured one of the first protagonists of color to appear in young adult literature, the African-American teenager Alfred Brooks, who struggles to become a contender both in the boxing ring and in life.
Before these two novels, literature for 12- to 18-year-olds was about as realistic as a Norman Rockwell painting—almost universally set in small-town, white America and featuring teenagers whose biggest problem was finding a date for the senior prom. Such books were patronizingly called “junior novels” and were typically sweet-spirited romances, a genre that defined the 1940s and 1950s and featured books by the likes of Janet Lambert, Betty Cavanna, and Rosamond DuJardin, among others. Indeed, virtually all literature for young readers in those two nostalgia-inducing decades consisted of inconsequential, formulaic, genre fiction: not only romance but also science fiction, adventure tales, and novels about sports, cars, and careers.
Small wonder, then, that this newly hard-edged, truth-telling, realistic fiction filled such a need. Seemingly overnight, a new genre, young adult literature, sprang into being. Within two years, noteworthy novels such as Paul Zindel’s My Darling, My Hamburger and John Donovan’s I’ll Get There. It Better Be Worth the Trip had embraced real world considerations like abortion and homosexuality, respectively. In 1971, Hinton wrote about drug abuse in That Was Then. This Is Now and in 1973 Alice Childress joined her with A Hero Ain’t Nothin’ But a Sandwich , which told a story of heroin addiction.
And then came 1974, and the publication of one of the most important and influential novels in the history of young adult literature. Robert Cormier’s The Chocolate War was arguably the first young adult novel to trust teens with the sad truth that not all endings are happy ones. In this unforgettable book, arguably the first literary young adult novel, 17-year-old protagonist Jerry Renault steadfastly refuses to sell chocolates for his school—an act with dire consequences. Cormier took his readers into the dark heart of adolescent anxiety, and turned on the lights, revealing a bleak moral landscape. In The Chocolate War and 14 other novels that followed, Cormier continued to dare to disturb a too-comfortable universe by acknowledging, as he told an interviewer, that, “Adolescence is such a lacerating time that most of us carry the baggage of it with us all our lives.”

Young adult literature, as we know it today, has been an exercise in evolution consonant with the evolution of the concept of the young adult itself. It hinges on the obvious fact that there could not be a young adult literature until there were “young adults,” something that didn’t happen until the late 1930s and early 1940s, when there emerged an American youth culture populated by kids newly called “teenagers.”
The word first appeared in print in the September 1941 issue of the magazine Popular Science Monthly . In earlier times, there had been—generally speaking—only two population segments in America: adults and children (the latter becoming adults when they entered the workforce, sometimes at as young as age 10). But in the 1930s and 1940s, driven by a drying-up of the job market during the Great Depression, record numbers of adolescents started attending high school. In 1939, 75 percent of 14- to 17-year-olds were enrolled in high school. A decade earlier only 50 percent had been.
Popular culture took note and teenagers quickly became a staple feature of radio and motion pictures, often presented as stereotypical figures of fun. Boys were depicted as socially awkward, blushing, stammering, and accident-prone, while girls were giggly and boy-crazy. Teenagers were also consumers, editors at the new Seventeen magazine saw in 1945, when they hired the research company Benson and Benson to conduct market research that showed that girls—and boys—now had money of their own to spend. As a result, the entertainment industries began creating radio programs and motion pictures targeted at teens, offerings like A Date with Judy, Meet Corliss Archer, and—for boys— The Roy Rogers Show, Hopalong Cassidy , and Gene Autry’s Melody Ranch . That quintessential teenager Mickey Rooney became a star of the Andy Hardy movies, while Deanna Durbin emoted for girls. Teenagers clearly were more innocent then–or so parents hoped.
Librarians first began calling teenagers “young adults” as early as the mid-1940s. In 1944, librarian Margaret Scoggin wrote a journal article introducing the term, and arguing that the group constituted a new service population. (Scoggin is remembered for her work in helping to establish the New York Public Library’s landmark Nathan Straus Branch for Children and Young People in 1940. The Branch became a template for other libraries that established service for young adults in the 1940s.) Thereafter, the two designations—“teenager” and “young adult”—were typically used interchangeably by librarians and educators. The practice of referring to “young adult” literature was formalized in 1957 when the American Library Association created its Young Adult Services Division, which focused librarians’ attention on how to serve this new population.
Book people were talking the talk in the 1940s and 1950s—but they had a teenage readership without a literature to match its evolving interests and its socioeconomic, emotional, and psychological needs. The genre fiction that was epidemic in the 1940s, 1950s, and early 1960s could not hope to do that—and the Young Adult Services Division recognized it. For several decades its annual lists of the best books for young adults included only books written for all adults, novels such as Isaac Asimov’s Fantastic Voyage (1966), Charles Portis’s True Grit (1968), and Ray Bradbury’s I Sing the Body Electric! (1969).
It wasn’t until 1970—three years after the formative publications of The Outsiders and The Contender —that a newly emergent, serious young adult literature was recognized. For the first time ever, an actual YA novel, written specifically for readers in that new, in-between segment of the population—Barbara Wersba’s Run Softly, Go Fast , about a teenage boy’s love-hate relationship with his father—was first admitted to the list.
And so, finally, young adults and their literature came together. The rest is a history that has seen young adult literature grow to become one of the most dynamic and influential segments of American publishing, one that is enjoyed not only by young adults but by adults as well. But that’s another story.
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Article Contents
Introduction.
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Young people and healthy eating: a systematic review of research on barriers and facilitators
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J Shepherd, A Harden, R Rees, G Brunton, J Garcia, S Oliver, A Oakley, Young people and healthy eating: a systematic review of research on barriers and facilitators, Health Education Research , Volume 21, Issue 2, 2006, Pages 239–257, https://doi.org/10.1093/her/cyh060
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A systematic review was conducted to examine the barriers to, and facilitators of, healthy eating among young people (11–16 years). The review focused on the wider determinants of health, examining community- and society-level interventions. Seven outcome evaluations and eight studies of young people's views were included. The effectiveness of the interventions was mixed, with improvements in knowledge and increases in healthy eating but differences according to gender. Barriers to healthy eating included poor school meal provision and ease of access to, relative cheapness of and personal taste preferences for fast food. Facilitators included support from family, wider availability of healthy foods, desire to look after one's appearance and will-power. Friends and teachers were generally not a common source of information. Some of the barriers and facilitators identified by young people had been addressed by soundly evaluated effective interventions, but significant gaps were identified where no evaluated interventions appear to have been published (e.g. better labelling of food products), or where there were no methodologically sound evaluations. Rigorous evaluation is required particularly to assess the effectiveness of increasing the availability of affordable healthy food in the public and private spaces occupied by young people.
Healthy eating contributes to an overall sense of well-being, and is a cornerstone in the prevention of a number of conditions, including heart disease, diabetes, high blood pressure, stroke, cancer, dental caries and asthma. For children and young people, healthy eating is particularly important for healthy growth and cognitive development. Eating behaviours adopted during this period are likely to be maintained into adulthood, underscoring the importance of encouraging healthy eating as early as possible [ 1 ]. Guidelines recommend consumption of at least five portions of fruit and vegetables a day, reduced intakes of saturated fat and salt and increased consumption of complex carbohydrates [ 2, 3 ]. Yet average consumption of fruit and vegetables in the UK is only about three portions a day [ 4 ]. A survey of young people aged 11–16 years found that nearly one in five did not eat breakfast before going to school [ 5 ]. Recent figures also show alarming numbers of obese and overweight children and young people [ 6 ]. Discussion about how to tackle the ‘epidemic’ of obesity is currently high on the health policy agenda [ 7 ], and effective health promotion remains a key strategy [ 8–10 ].
Evidence for the effectiveness of interventions is therefore needed to support policy and practice. The aim of this paper is to report a systematic review of the literature on young people and healthy eating. The objectives were
(i) to undertake a ‘systematic mapping’ of research on the barriers to, and facilitators of, healthy eating among young people, especially those from socially excluded groups (e.g. low-income, ethnic minority—in accordance with government health policy);
(ii) to prioritize a subset of studies to systematically review ‘in-depth’;
(iii) to ‘synthesize’ what is known from these studies about the barriers to, and facilitators of, healthy eating with young people, and how these can be addressed and
(iv) to identify gaps in existing research evidence.
General approach
This study followed standard procedures for a systematic review [ 11, 12 ]. It also sought to develop a novel approach in three key areas.
First, it adopted a conceptual framework of ‘barriers’ to and ‘facilitators’ of health. Research findings about the barriers to, and facilitators of, healthy eating among young people can help in the development of potentially effective intervention strategies. Interventions can aim to modify or remove barriers and use or build upon existing facilitators. This framework has been successfully applied in other related systematic reviews in the area of healthy eating in children [ 13 ], physical activity with children [ 14 ] and young people [ 15 ] and mental health with young people [16; S. Oliver, A. Harden, R. Rees, J. Shepherd, G. Brunton and A. Oakley, manuscript in preparation].
Second, the review was carried out in two stages: a systematic search for, and mapping of, literature on healthy eating with young people, followed by an in-depth systematic review of the quality and findings of a subset of these studies. The rationale for a two-stage review to ensure the review was as relevant as possible to users. By mapping a broad area of evidence, the key characteristics of the extant literature can be identified and discussed with review users, with the aim of prioritizing the most relevant research areas for systematic in-depth analysis [ 17, 18 ].
Third, the review utilized a ‘mixed methods’ triangulatory approach. Data from effectiveness studies (‘outcome evaluations’, primarily quantitative data) were combined with data from studies which described young people's views of factors influencing their healthy eating in negative or positive ways (‘views’ studies, primarily qualitative). We also sought data on young people's perceptions of interventions when these had been collected alongside outcomes data in outcome evaluations. However, the main source of young people's views was surveys or interview-based studies that were conducted independently of intervention evaluation (‘non-intervention’ research). The purpose was to enable us to ascertain not just whether interventions are effective, but whether they address issues important to young people, using their views as a marker of appropriateness. Few systematic reviews have attempted to synthesize evidence from both intervention and non-intervention research: most have been restricted to outcome evaluations. This study therefore represents one of the few attempts that have been made to date to integrate different study designs into systematic reviews of effectiveness [ 19–22 ].
Literature searching
A highly sensitive search strategy was developed to locate potentially relevant studies. A wide range of terms for healthy eating (e.g. nutrition, food preferences, feeding behaviour, diets and health food) were combined with health promotion terms or general or specific terms for determinants of health or ill-health (e.g. health promotion, behaviour modification, at-risk-populations, sociocultural factors and poverty) and with terms for young people (e.g. adolescent, teenager, young adult and youth). A number of electronic bibliographic databases were searched, including Medline, EMBASE, The Cochrane Library, PsycINFO, ERIC, Social Science Citation Index, CINAHL, BiblioMap and HealthPromis. The searches covered the full range of publication years available in each database up to 2001 (when the review was completed).
Full reports of potentially relevant studies identified from the literature search were obtained and classified (e.g. in terms of specific topic area, context, characteristics of young people, research design and methodological attributes).
Inclusion screening
Inclusion criteria were developed and applied to each study. The first round of screening was to identify studies to populate the map. To be included, a study had to (i) focus on healthy eating; (ii) include young people aged 11–16 years; (iii) be about the promotion of healthy eating, and/or the barriers to, or facilitators of, healthy eating; (iv) be a relevant study type: (a) an outcome evaluation or (b) a non-intervention study (e.g. cohort or case control studies, or interview studies) conducted in the UK only (to maximize relevance to UK policy and practice) and (v) be published in the English language.
The results of the map, which are reported in greater detail elsewhere [ 23 ], were used to prioritize a subset of policy relevant studies for the in-depth systematic review.
A second round of inclusion screening was performed. As before, all studies had to have healthy eating as their main focus and include young people aged 11–16 years. In addition, outcome evaluations had toFor a non-intervention study to be included it had to
(i) use a comparison or control group; report pre- and post-intervention data and, if a non-randomized trial, equivalent on sociodemographic characteristics and pre-intervention outcome variables (demonstrating their ‘potential soundness’ in advance of further quality assessment);
(ii) report an intervention that aims to make a change at the community or society level and
(iii) measure behavioural and/or physical health status outcomes.
(i) examine young people's attitudes, opinions, beliefs, feelings, understanding or experiences about healthy eating (rather than solely examine health status, behaviour or factual knowledge);
(ii) access views about one or more of the following: young people's definitions of and/or ideas about healthy eating, factors influencing their own or other young people's healthy eating and whether and how young people think healthy eating can be promoted and
(iii) privilege young people's views—presenting views directly as data that are valuable and interesting in themselves, rather than only as a route to generating variables to be tested in a predictive or causal model.
Non-intervention studies published before 1990 were excluded in order to maximize the relevance of the review findings to current policy issues.
Data extraction and quality assessment
All studies meeting inclusion criteria underwent data extraction and quality assessment, using a standardized framework [ 24 ]. Data for each study were entered independently by two researchers into a specialized computer database [ 25 ] (the full and final data extraction and quality assessment judgement for each study in the in-depth systematic review can be viewed on the Internet by visiting http://eppi.ioe.ac.uk ).
Outcome evaluations were considered methodologically ‘sound’ if they reported:Only studies meeting these criteria were used to draw conclusions about effectiveness. The results of the studies which did not meet these quality criteria were judged unclear.
(i) a control or comparison group equivalent to the intervention group on sociodemographic characteristics and pre-intervention outcome variables.
(ii) pre-intervention data for all individuals or groups recruited into the evaluation;
(iii) post-intervention data for all individuals or groups recruited into the evaluation and
(iv) on all outcomes, as described in the aims of the intervention.
Non-intervention studies were assessed according to a total of seven criteria (common to sets of criteria proposed by four research groups for qualitative research [ 26–29 ]):
(i) an explicit account of theoretical framework and/or the inclusion of a literature review which outlined a rationale for the intervention;
(ii) clearly stated aims and objectives;
(iii) a clear description of context which includes detail on factors important for interpreting the results;
(iv) a clear description of the sample;
(v) a clear description of methodology, including systematic data collection methods;
(vi) analysis of the data by more than one researcher and
(vii) the inclusion of sufficient original data to mediate between data and interpretation.
Data synthesis
Three types of analyses were performed: (i) narrative synthesis of outcome evaluations, (ii) narrative synthesis of non-intervention studies and (iii) synthesis of intervention and non-intervention studies together.
For the last of these a matrix was constructed which laid out the barriers and facilitators identified by young people alongside descriptions of the interventions included in the in-depth systematic review of outcome evaluations. The matrix was stratified by four analytical themes to characterize the levels at which the barriers and facilitators appeared to be operating: the school, family and friends, the self and practical and material resources. This methodology is described further elsewhere [ 20, 22, 30 ].
From the matrix it is possible to see:
(i) where barriers have been modified and/or facilitators built upon by soundly evaluated interventions, and ‘promising’ interventions which need further, more rigorous, evaluation (matches) and
(ii) where barriers have not been modified and facilitators not built upon by any evaluated intervention, necessitating the development and rigorous evaluation of new interventions (gaps).
Figure 1 outlines the number of studies included at various stages of the review. Of the total of 7048 reports identified, 135 reports (describing 116 studies) met the first round of screening and were included in the descriptive map. The results of the map are reported in detail in a separate publication—see Shepherd et al. [ 23 ] (the report can be downloaded free of charge via http://eppi.ioe.ac.uk ). A subset of 22 outcome evaluations and 8 studies of young people's views met the criteria for the in-depth systematic review.

The review process.
Outcome evaluations
Of the 22 outcome evaluations, most were conducted in the United States ( n = 16) [ 31–45 ], two in Finland [ 46, 47 ], and one each in the UK [ 48 ], Norway [ 49 ], Denmark [ 50 ] and Australia [ 51 ]. In addition to the main focus on promoting healthy eating, they also addressed other related issues including cardiovascular disease in general, tobacco use, accidents, obesity, alcohol and illicit drug use. Most were based in primary or secondary school settings and were delivered by teachers. Interventions varied considerably in content. While many involved some form of information provision, over half ( n = 13) involved attempts to make structural changes to young people's physical environments; half ( n = 11) trained parents in or about nutrition, seven developed health-screening resources, five provided feedback to young people on biological measures and their behavioural risk status and three aimed to provide social support systems for young people or others in the community. Social learning theory was the most common theoretical framework used to develop these interventions. Only a minority of studies included young people who could be considered socially excluded ( n = 6), primarily young people from ethnic minorities (e.g. African Americans and Hispanics).
Following detailed data extraction and critical appraisal, only seven of the 22 outcome evaluations were judged to be methodologically sound. For the remainder of this section we only report the results of these seven. Four of the seven were from the United States, with one each from the UK, Norway and Finland. The studies varied in the comprehensiveness of their reporting of the characteristics of the young people (e.g. sociodemographic/economic status). Most were White, living in middle class urban areas. All attended secondary schools. Table I details the interventions in these sound studies. Generally, they were multicomponent interventions in which classroom activities were complemented with school-wide initiatives and activities in the home. All but one of the seven sound evaluations included and an integral evaluation of the intervention processes. Some studies report results according to demographic characteristics such as age and gender.
Soundly evaluated outcome evaluations: study characteristics (n = 7)
RCT = Randomized Controlled Trial; CT = controlled trial (no randomization); PE = process evaluation.
Separate evaluations of the same intervention in two populations in New York (the Bronx and Westchester County).
The UK-based intervention was an award scheme (the ‘Wessex Healthy Schools Award’) that sought to make health-promoting changes in school ethos, organizational functioning and curriculum [ 48 ]. Changes made in schools included the introduction of health education curricula, as well as the setting of targets in key health promotion areas (including healthy eating). Knowledge levels, which were high at baseline, changed little over the course of the intervention. Intervention schools performed better in terms of healthy food choices (on audit scores). The impact on measures of healthy eating such as choosing healthy snacks varied according to age and sex. The intervention only appeared possibly to be effective for young women in Year 11 (aged 15–16 years) on these measures (statistical significance not reported).
The ‘Know Your Body’ intervention, a cardiovascular risk reduction programme, was evaluated in two separate studies in two demographically different areas of New York (the Bronx and Westchester County) [ 45 ]. Lasting for 5 years it comprised teacher-led classroom education, parental involvement activities and risk factor examination in elementary and junior high schools. In the Bronx evaluation, statistically significant increases in knowledge were reported, but favourable changes in cholesterol levels and dietary fat were not significant. In the Westchester County evaluation, we judged the effects to be unclear due to shortcomings in methods reported.
A second US-based study, the 3-year ‘Gimme 5’ programme [ 40 ], focused on increasing consumption of fruits and vegetables through a school-wide media campaign, complemented by classroom activities, parental involvement and changes to nutritional content of school meals. The intervention was effective at increasing knowledge (particularly among young women). Effects were measured in terms of changes in knowledge scores between baseline and two follow-up periods. Differences between the intervention and comparison group were significant at both follow-ups. There was a significant increase in consumption of fruit and vegetables in the intervention group, although this was not sustained.
In the third US study, the ‘Slice of Life’ intervention, peer leaders taught 10 sessions covering the benefits of fitness, healthy diets and issues concerning weight control [ 41 ]. School functioning was also addressed by student recommendations to school administrators. For young women, there were statistically significant differences between intervention and comparison groups on healthy eating scores, salt consumption scores, making healthy food choices, knowledge of healthy food, reading food labels for salt and fat content and awareness of healthy eating. However, among young men differences were only significant for salt and knowledge scores. The process evaluation suggested that having peers deliver training was acceptable to students and the peer-trainers themselves.
A Norwegian study evaluated a similar intervention to the ‘Slice of Life’ programme, employing peer educators to lead classroom activities and small group discussions on nutrition [ 49 ]. Students also analysed the availability of healthy food in their social and home environment and used a computer program to analyse the nutritional status of foods. There were significant intervention effects for reported healthy eating behaviour (but not maintained by young men) and for knowledge (not young women).
The second ‘North Karelia Youth Study’ in Finland featured classroom educational activities, a community media campaign, health-screening activities, changes to school meals and a health education initiative in the parents' workplace [ 47 ]. It was judged to be effective for healthy eating behaviour, reducing systolic blood pressure and modifying fat content of school meals, but less so for reducing cholesterol levels and diastolic blood pressure.
The evidence from the well-designed evaluations of the effectiveness of healthy eating initiatives is therefore mixed. Interventions tend to be more effective among young women than young men.
Young people's views
Table II describes the key characteristics of the eight studies of young people's views. The most consistently reported characteristics of the young people were age, gender and social class. Socioeconomic status was mixed, and in the two studies reporting ethnicity, the young people participating were predominantly White. Most studies collected data in mainstream schools and may therefore not be applicable to young people who infrequently or never attend school.
Characteristics of young people's views studies (n = 8)
All eight studies asked young people about their perceptions of, or attitudes towards, healthy eating, while none explicitly asked them what prevents them from eating healthily. Only two studies asked them what they think helps them to eat healthy foods, and only one asked for their ideas about what could or should be done to promote nutrition.
Young people tended to talk about food in terms of what they liked and disliked, rather than what was healthy/unhealthy. Healthy foods were predominantly associated with parents/adults and the home, while ‘fast food’ was associated with pleasure, friendship and social environments. Links were also made between food and appearance, with fast food perceived as having negative consequences on weight and facial appearance (and therefore a rationale for eating healthier foods). Attitudes towards healthy eating were generally positive, and the importance of a healthy diet was acknowledged. However, personal preferences for fast foods on grounds of taste tended to dominate food choice. Young people particularly valued the ability to choose what they eat.
Despite not being explicitly asked about barriers, young people discussed factors inhibiting their ability to eat healthily. These included poor availability of healthy meals at school, healthy foods sometimes being expensive and wide availability of, and personal preferences for, fast foods. Things that young people thought should be done to facilitate healthy eating included reducing the price of healthy snacks and better availability of healthy foods at school, at take-aways and in vending machines. Will-power and encouragement from the family were commonly mentioned support mechanisms for healthy eating, while teachers and peers were the least commonly cited sources of information on nutrition. Ideas for promoting healthy eating included the provision of information on nutritional content of school meals (mentioned by young women particularly) and better food labelling in general.
Table III shows the synthesis matrix which juxtaposes barriers and facilitators alongside results of outcome evaluations. There were some matches but also significant gaps between, on the one hand, what young people say are barriers to healthy eating, what helps them and what could or should be done and, on the other, soundly evaluated interventions that address these issues.
Synthesis matrix
Key to young people's views studies: Y1 , Dennison and Shepherd [ 56 ]; Y2 , Harris [ 57 ]; Y3 , McDougall [ 58 ]; Y4 , Miles and Eid [ 59 ]; Y5 , Roberts et al. [ 60 ]; Y6 , Ross [ 61 ]; Y7 , Watt and Sheiham [ 62 ]; Y8 , Watt and Sheiham [ 63 ]. Key to intervention studies: OE1 , Baranowski et al. [ 31 ]; OE2 , Bush et al. [ 32 ]; OE3 , Coates et al. [ 33 ]; OE4 , Ellison et al. [ 34 ]; OE5 , Flores [ 36 ]; OE6 , Fitzgibbon et al. [ 35 ]; OE7 , Hopper et al. [ 64 ]; OE8 , Holund [ 50 ]; OE9 , Kelder et al. [ 38 ]; OE10 , Klepp and Wilhelmsen [ 49 ]; OE11 , Moon et al. [ 48 ]; OE12 , Nader et al. [ 39 ]; OE13 , Nicklas et al. [ 40 ]; OE14 , Perry et al. [ 41 ]; OE15 , Petchers et al. [ 42 ]; OE16 , Schinke et al. [ 43 ]; OE17 , Wagner et al. [ 44 ]; OE18 , Vandongen et al. [ 51 ]; OE19 , Vartiainen et al. [ 46 ]; OE20 , Vartiainen et al. [ 47 ]; OE21 , Walter I [ 45 ]; OE22 , Walter II [ 45 ]. OE10, OE11, OE13, OE14, OE20, OE21 and OE22 denote a sound outcome evaluation. OE21 and OE22 are separate evaluations of the same intervention. Due to methodological limitations, we have judged the effects of OE22 to be unclear. Y1 and Y2 do not appear in the synthesis matrix as they did not explicitly report barriers or facilitators, and it was not possible for us to infer potential barriers or facilitators. However, these two studies did report what young people understood by healthy eating, their perceptions, and their views and opinions on the importance of eating a healthy diet. OE2, OE12, OE16 and OE17 do not appear in the synthesis matrix as they did not address any of the barriers or facilitators.
In terms of the school environment, most of the barriers identified by young people appear to have been addressed. At least two sound outcome evaluations demonstrated the effectiveness of increasing the availability of healthy foods in the school canteen [ 40, 47 ]. Furthermore, despite the low status of teachers and peers as sources of nutritional information, several soundly evaluated studies showed that they can be employed effectively to deliver nutrition interventions.
Young people associated parents and the home environment with healthy eating, and half of the sound outcome evaluations involved parents in the education of young people about nutrition. However, problems were sometimes experienced in securing parental attendance at intervention activities (e.g. seminar evenings). Why friends were not a common source of information about good nutrition is not clear. However, if peer pressure to eat unhealthy foods is a likely explanation, then it has been addressed by the peer-led interventions in three sound outcome evaluations (generally effectively) [ 41, 47, 49 ] and two outcome evaluations which did not meet the quality criteria (effectiveness unclear) [ 33, 50 ].
The fact that young people choose fast foods on grounds of taste has generally not been addressed by interventions, apart from one soundly evaluated effective intervention which included taste testings of fruit and vegetables [ 40 ]. Young people's concern over their appearance (which could be interpreted as both a barrier and a facilitator) has only been addressed in one of the sound outcome evaluations (which revealed an effective intervention) [ 41 ]. Will-power to eat healthy foods has only been examined in one outcome evaluation in the in-depth systematic review (judged to be sound and effective) (Walter I—Bronx evaluation) [ 45 ]. The need for information on nutrition was addressed by the majority of interventions in the in-depth systematic review. However, no studies were found which evaluated attempts to increase the nutritional content of school meals.
Barriers and facilitators relating to young people's practical and material resources were generally not addressed by interventions, soundly evaluated or otherwise. No studies were found which examined the effectiveness of interventions to lower the price of healthy foods. However, one soundly evaluated intervention was partially effective in increasing the availability of healthy snacks in community youth groups (Walter I—Bronx evaluation) [ 45 ]. At best, interventions have attempted to raise young people's awareness of environmental constraints on eating healthily, or encouraged them to lobby for increased availability of nutritious foods (in the case of the latter without reporting whether any changes have been effected as a result).
This review has systematically identified some of the barriers to, and facilitators of, healthy eating with young people, and illustrated to what extent they have been addressed by soundly evaluated effective interventions.
The evidence for effectiveness is mixed. Increases in knowledge of nutrition (measured in all but one study) were not consistent across studies, and changes in clinical risk factors (measured in two studies) varied, with one study detecting reductions in cholesterol and another detecting no change. Increases in reported healthy eating behaviour were observed, but mostly among young women revealing a distinct gender pattern in the findings. This was the case in four of the seven outcome evaluations (in which analysis was stratified by gender). The authors of one of the studies suggest that emphasis of the intervention on healthy weight management was more likely to appeal to young women. It was proposed that interventions directed at young men should stress the benefits of nutrition on strength, physical endurance and physical activity, particularly to appeal to those who exercise and play sports. Furthermore, age was a significant factor in determining effectiveness in one study [ 48 ]. Impact was greatest on young people in the 15- to 16-year age range (particularly for young women) in comparison with those aged 12–13 years, suggesting that dietary influences may vary with age. Tailoring the intervention to take account of age and gender is therefore crucial to ensure that interventions are as relevant and meaningful as possible.
Other systematic reviews of interventions to promote healthy eating (which included some of the studies with young people fitting the age range of this review) also show mixed results [ 52–55 ]. The findings of these reviews, while not being directly comparable in terms of conceptual framework, methods and age group, seem to offer some support for the findings of this review. The main message is that while there is some evidence to suggest effectiveness, the evidence base is limited. We have identified no comparable systematic reviews in this area.
Unlike other reviews, however, this study adopted a wider perspective through inclusion of studies of young people's views as well as effectiveness studies. A number of barriers to healthy eating were identified, including poor availability of healthy foods at school and in young people's social spaces, teachers and friends not always being a source of information/support for healthy eating, personal preferences for fast foods and healthy foods generally being expensive. Facilitating factors included information about nutritional content of foods/better labelling, parents and family members being supportive; healthy eating to improve or maintain one's personal appearance, will-power and better availability/lower pricing of healthy snacks.
Juxtaposing barriers and facilitators alongside effectiveness studies allowed us to examine the extent to which the needs of young people had been adequately addressed by evaluated interventions. To some extent they had. Most of the barriers and facilitators that related to the school and relationships with family and friends appear to have been taken into account by soundly evaluated interventions, although, as mentioned, their effectiveness varied. Many of the gaps tended to be in relation to young people as individuals (although our prioritization of interventions at the level of the community and society may have resulted in the exclusion of some of these interventions) and the wider determinants of health (‘practical and material resources’). Despite a wide search, we found few evaluations of strategies to improve nutritional labelling on foods particularly in schools or to increase the availability of affordable healthy foods particularly in settings where young people socialize. A number of initiatives are currently in place which may fill these gaps, but their effectiveness does not appear to have been reported yet. It is therefore crucial for any such schemes to be thoroughly evaluated and disseminated, at which point an updated systematic review would be timely.
This review is also constrained by the fact that its conclusions can only be supported by a relatively small proportion of the extant literature. Only seven of the 22 outcome evaluations identified were considered to be methodologically sound. As illustrated in Table III , a number of the remaining 15 interventions appear to modify barriers/build on facilitators but their results can only be judged unclear until more rigorous evaluation of these ‘promising’ interventions has been reported.
Finally, it is important to acknowledge that the majority of the outcome evaluations were conducted in the United States, and by virtue of the inclusion criteria, all the young people's views studies were UK based. The literature therefore might not be generalizable to other countries, where sociocultural values and socioeconomic circumstances may be quite different. Further evidence synthesis is needed on barriers to, and facilitators of, healthy eating and nutrition worldwide, particularly in developing countries.
The aim of this study was to survey what is known about the barriers to, and facilitators of, healthy eating among young people with a view to drawing out the implications for policy and practice. The review has mapped and quality screened the extant research in this area, and brought together the findings from evaluations of interventions aiming to promote healthy eating and studies which have elicited young people's views.
There has been much research activity in this area, yet it is disappointing that so few evaluation studies were methodologically strong enough to enable us to draw conclusions about effectiveness. There is some evidence to suggest that multicomponent school-based interventions can be effective, although effects tended to vary according to age and gender. Tailoring intervention messages accordingly is a promising approach which should therefore be evaluated. A key theme was the value young people place on choice and autonomy in relation to food. Increasing the provision and range of healthy, affordable snacks and meals in schools and social spaces will enable them to exercise their choice of healthier, tasty options.
We have identified that several barriers to, and facilitators of, healthy eating in young people have received little attention in evaluation research. Further work is needed to develop and evaluate interventions which modify or remove these barriers, and build on these facilitators. Further qualitative studies are also needed so that we can continue to listen to the views of young people. This is crucial if we are to develop and test meaningful, appropriate and effective health promotion strategies.
We would like to thank Chris Bonell and Dina Kiwan for undertaking data extraction. We would also like to acknowledge the invaluable help of Amanda Nicholas, James Thomas, Elaine Hogan, Sue Bowdler and Salma Master for support and helpful advice. The Department of Health, England, funds a specific programme of health promotion work at the EPPI-Centre. The views expressed in the report are those of the authors and not necessarily those of the Department of Health.
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Young adults' experience of stroke: a qualitative review of the literature
Affiliation.
- 1 Buchanan House, School of Health, Glasgow Caledonian University, UK.
- PMID: 20220675
- DOI: 10.12968/bjon.2010.19.4.46787
Stroke is a life-threatening event that has a devastating impact on young adults and their families. The author conducted a systematic review of the qualitative literature to explore the experience of stroke from the perspective of young adults. Four primary research 'papers' were analyzed using the Qualitative Assessment and Review Instrument; 60 findings were extracted from the papers and merged into 13 categories, from which three synthesized findings were developed - disorientation, disrupted sense of self, and roles and relationships. Many of the effects of stroke are 'invisible' but have significant impact on social participation, including the ability to return to work and to enjoy an active social life. Young adults feel the same and yet different following stroke, which may have a profound effect on relationships. Effective communication between patients, families and health professionals is crucial to all aspects of recovery.
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The English Journal is a journal of ideas for English language arts teachers in junior and senior high schools and middle schools. EJ presents information on the teaching of writing and reading, literature, and language. Each issue examines the relationship of theory and research to classroom practice, and reviews current materials of interest to English teachers, including books and electronic media. The journal is published bimonthly in September, November, January, March, May, and July.
The National Council of Teachers of English (NCTE), a not-for-profit professional association of educators, is dedicated to improving the teaching and learning of English and the language arts at all levels of education. Since 1911, NCTE has provided a forum for the profession, an array of opportunities for teachers to continue their professional growth throughout their careers, and a framework for cooperation to deal with issues that affect the teaching of English. For more information, please visit www.ncte.org.
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The Relevance of Young Adult Literature
Tackling tough questions, two profiles of engaged classes, dina: teaching life lessons, leah: broadening perspectives, a bridge to alienated students, breaking through reluctance, a forum for tweens.

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As a believer in the power of young adult literature to bring teenagers into an intimate relationship with reading, I was elated that this college-bound senior found pleasure in reading about other contemporary teens. Jennifer had successfully mastered works by Shakespeare, Dostoevsky, and Charlotte Brontë, but she also enjoyed books by Rita Williams-Garcia and Han Nolan. She explained, I like to read all kinds of books. My friends and I balance the books we are assigned in school with novels like this one that are about us, about problems we are going through now.
The “problem novel” genre of young adult literature is based on the philosophy of Kenneth Donelson and Alleen Pace Nilsen (2005) that Young people will have a better chance to be happy if they have realistic expectations and if they know both the bad and the good about the society in which they live. (p. 117)
During one of my visits to Dina's classroom, students were discussing Melinda, the 9th grade protagonist in Speak . Melinda is raped by a popular senior at a party but decides not to tell anyone. Jamarcus, an 8th grade boy, asserted during the discussion that Girls need to wake up and stop being scared to tell on a boy. Sometimes boys think they got power over girls and do things they shouldn't, and that ain't right.
Anisha countered Jamarcus by saying that she understood why Melinda didn't tell anybody: I would just keep it to myself 'cause it's better than everybody knowing what happened to you. Nobody would understand.
Leah describes how she introduces Make Lemonade : I have students respond to the saying “When life gives you lemons, make lemonade” with this journal prompt: Describe a time in your life when you had to adhere to this quote. I always make lemonade to kick off our unit and we talk about its taste, smell, and effect on people. Students really start to open up about times in their lives that have been extremely difficult. This introduction gets a lot of dialogue going.
In 2004, 68 percent of 11- to 14-year-olds surveyed had a TV in their bedrooms.
— Generation M: Media in the Lives of 8–18 Year-Olds , Kaiser Family Foundation, March 2005
Besides energizing the class and enriching group discussion, the right young adult novel can provide teachers with a way to reach an individual student struggling with the standard curriculum. A 9th grade teacher shared with me how she used graphic novels, a form in which the story is told as much with sophisticated illustrations and captions as with straight text, to break through to an alienated adolescent: Anime [a style of cartoon animation] is a great way to motivate reluctant readers. One of my students who is usually very shy and unresponsive was immediately motivated when I spoke with him about the possibility of using graphic novels in our class. He offered to lend some of his novels to me and then showed me his own anime drawings on his personal Web site. Had I paid attention and delved into the graphic genre earlier in the year, I could have generated a great deal more interest in learning from this young man.
Mandy, a 10th grade teacher, experimented with allowing her students to individually select from among 26 young adult novels that had recently won awards. To assess the learning outcomes of this project, she had students present book talks to the class on their chosen novel. Many otherwise reluctant readers jumped at the chance to take ownership of a book that was meaningful to them. One student serendipitously learned to enjoy historical fiction through reading A Single Shard by Linda Sue Park. In an end-of-unit reflection, he wrote, I felt like I was there with Tree-ear [the main character] during his dangerous journey. History can be more than dry facts.
For example, Janice, a 9th grade English teacher, attributed the lack of young adult novels in many classrooms to a lack of teacher knowledge or understanding of this resource. She decided to teach with young adult novels partly because of how they can expand into other areas of the curriculum. She noted that Some historical fiction can be incorporated into the social studies curriculum. Young adult novels stimulate conversation about different historical periods in a way that textbooks can't.
Carolyn, a 7th grade teacher, agreed that we need to convince skeptical teachers of the quality of young adult literature: From historical fiction to graphic novels to science fiction, this literature is about the human experience, just as all good literature is. Young adult books encourage students to read more. They can be gateway experiences for all students.
- Read widely and deeply.
- Involve students in the process of literature selection.
- Give students choices.
- Collaborate with colleagues, including library media specialists.
Bushman, J., & Haas, K. (2001). Using young adult literature in the English classroom (3rd ed.). Upper Saddle River, NJ: Merrill/Prentice-Hall.
Donelson, K., & Nilsen, A. P. (2005). Literature for today's young adults (7th ed.). New York: Allyn and Bacon.
Salvner, G. (2001). Lessons and lives: Why young adult literature matters. The ALAN Review, 28 (3).
Stallworth, B. J. (1998). The young adult literature course: Facilitating the integration of young adult literature into the high school English classroom. The ALAN Review, 26 (1), 25–30.
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The Value of Young Adult Literature
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By Michael Cart for YALSA
Adopted by yalsa’s board of directors, january 2008.
Abstract: This White Paper will discuss the nature and evolution of young adult literature with particular emphasis on its current condition and its value to its intended readership. In discussing its increased viability as a body of critically lauded literature, it will also discuss its importance in meeting the life needs of young adults and its increasing value in enhancing adolescent literacy. It will conclude by affirming the Young Adult Library Services Association’s commitment to evaluating, promoting, and supporting the most widespread availability possible of this literature to American youth.
Background: The term “young adult literature” is inherently amorphous, for its constituent terms “young adult” and “literature” are dynamic, changing as culture and society — which provide their context — change. When the term first found common usage in the late 1960’s, it referred to realistic fiction that was set in the real (as opposed to imagined), contemporary world and addressed problems, issues, and life circumstances of interest to young readers aged approximately 12-18. Such titles were issued by the children’s book divisions of American publishers and were marketed to institutions – libraries and schools – that served such populations. While some of this remains true today, much else has changed. In recent years, for example, the size of this population group has changed dramatically. Between 1990 and 2000 the number of persons between 12 and 19 soared to 32 million, a growth rate of seventeen percent that significantly outpaced the growth of the rest of the population. The size of this population segment has also increased as the conventional definition of “young adult” has expanded to include those as young as ten and, since the late 1990s, as old as twenty-five.
“Literature,” which traditionally meant fiction, has also expanded to include new forms of literary – or narrative — nonfiction and new forms of poetry, including novels and book-length works of nonfiction in verse. The increasing importance of visual communication has begun to expand this definition to include the pictorial, as well, especially when offered in combination with text as in the case of picture books, comics, and graphic novels and nonfiction.
As a result of these newly expansive terms, the numbers of books being published for this audience have similarly increased, perhaps by as much as 25 percent, based on the number of titles being reviewed by a leading journal. Similarly, industry analyst Albert Greco states that the sale of young adult books increased by 23 percent from 1999 to 2005.
Though once dismissed as a genre consisting of little more than problem novels and romances, young adult literature has, since the mid-1990’s, come of age as literature – literature that welcomes artistic innovation, experimentation, and risk-taking.
Evidence of this is the establishment of the Michael L. Printz Award, which YALSA presents annually to the author of the best young adult book of the year, “best” being defined solely in terms of literary merit. Further evidence is the extraordinary number of critically acclaimed adult authors who have begun writing for young adults – authors like Michael Chabon, Isabel Allende, Dale Peck, Julia Alvarez, T. C. Boyle, Joyce Carol Oates, Francine Prose, and a host of others. As a result of these and other innovations young adult literature has become one of the most dynamic, creatively exciting areas of publishing.
Position: YALSA is acknowledging this growing diversity by expanding the number of book-related awards and lists it presents and publishes. Audio books and graphic novels are only two of the new areas that YALSA is targeting. Meanwhile it continues to promote excellence in the field through such established prizes as the Printz, ALEX, and Margaret A. Edwards Awards and such recommended lists as Best Books for Young Adults and Quick Picks for Reluctant Young Adult Readers.
YALSA also acknowledges that whether one defines young adult literature narrowly or broadly, much of its value cannot be quantified but is to be found in how it addresses the needs of its readers. Often described as “developmental,” these needs recognize that young adults are beings in evolution, in search of self and identity; beings who are constantly growing and changing, morphing from the condition of childhood to that of adulthood. That period of passage called “young adulthood” is a unique part of life, distinguished by unique needs that are – at minimum — physical, intellectual, emotional, and societal in nature.
By addressing these needs, young adult literature is made valuable not only by its artistry but also by its relevance to the lives of its readers. And by addressing not only their needs but also their interests, the literature becomes a powerful inducement for them to read, another compelling reason to value it, especially at a time when adolescent literacy has become a critically important issue. The Alliance for Excellent Education has declared a “literacy crisis among middle and high school students” in the wake of research from the National Assessment of Educational Progress that finds 65 percent of graduating high school seniors and 71 percent of America’s eighth graders are reading below grade level.
As literacy has become another developmental need of young adults, organizations like the International Reading Association and the National Council of Teachers of English have begun to recognize the imperative need for “a wide variety of reading material that they (young adults) can and want to read” (IRA), books that “should be self-selected and of high interest to the reader” (NCTE), young adult books, in short.
As a literature of relevance that meets developmental needs – including literacy skills — young adult literature also becomes a developmental asset , which YALSA’s New Directions For Library Service To Young Adults defines as “a factor promoting positive teenage development.” The independent, nonprofit Search Institute offers a framework of forty such developmental assets.
YALSA finds another of the chief values of young adult literature in its capacity to offer readers an opportunity to see themselves reflected in its pages. Young adulthood is, intrinsically, a period of tension. On the one hand young adults have an all-consuming need to belong. But on the other, they are also inherently solipsistic, regarding themselves as being unique, which – for them — is not cause for celebration but, rather, for despair. For to be unique is to be unlike one’s peers, to be “other,” in fact. And to be “other” is to not belong but, instead, to be outcast. Thus, to see oneself in the pages of a young adult book is to receive the reassurance that one is not alone after all, not other, not alien but, instead, a viable part of a larger community of beings who share a common humanity. Another value of young adult literature is its capacity for fostering understanding, empathy, and compassion by offering vividly realized portraits of the lives – exterior and interior – of individuals who are un likethe reader. In this way young adult literature invites its readership to embrace the humanity it shares with those who – if not for the encounter in reading – might forever remain strangers or – worse — irredeemably “other.”
Still another value of young adult literature is its capacity for telling its readers the truth, however disagreeable that may sometimes be, for in this way it equips readers for dealing with the realities of impending adulthood and for assuming the rights and responsibilities of citizenship.
By giving readers such a frame of reference, it also helps them to find role models, to make sense of the world they inhabit, to develop a personal philosophy of being, to determine what is right and, equally, what is wrong, to cultivate a personal sensibility. To, in other words, become civilized.
Conclusion: For all of these reasons the Young Adult Library Services Association values young adult literature, believes it is an indispensable part of public and school library collections, and regards it as essential to healthy youth development and the corollary development of healthy communities in which both youth and libraries can thrive.
- Alliance for Excellent Education. Press Center, http://all4ed.org/press_room . Accessed 9/28/07.
- Cart, Michael. “Teens and the Future of Reading.” American Libraries. October 2007.
- Cart, Michael. “Young Adult Literature: The State of a Restless Art” in Passions and Pleasures by Michael Cart. Lanham, MD: The Scarecrow Press, 2007
- International Reading Association. “Adolescent Literacy” www.reading.org/resources/issues/positions_adolescent.html Accessed 9/28/07.
- Magazine Publishers of America. Teen Market Profile. www.magazine.org/content/files/teenprofile04.pdf (PDF file). Accessed 9/28/07.
- NCTE. “A Call To Action.” www.ncte.org Accessed 9/28/07.
- Patrick Jones for the Young Adult Library Services Association. New Directions for Library Service to Young Adults. Edited by Linda Waddle. Chicago: ALA, 2002.
- Search Institute. www.search-institute.org .

Young Adult Literature
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Young Adult literature is generally described as books written for an audience of 12-20 year olds. It may also include books primarily written for adults but which have appeal to younger readers.
The CSULB Children's Collection has a section dedicated to YA Fiction, PZ7.5. Nonfiction written for Young Adults is located throughout the children's nonfiction collection (Rm 204) organized by subject.
What is the difference between YA and adult literature? One idea: in YA, characters are discovering and pushing boundaries to discover themselves, in adult lit, characters tend to be constrained by those limits and are living within them.
Find YA in the library
- Find YA Books
- Find Info About YA Lit
Use OneSearch, Advanced Search to search for YA books. In the first box type CSULB Children's Collection and in the second box search title, author, or keyword.
For Fiction: Limit your location to Children's Young Adult Fiction under location on the left side of the screen. All YA Fiction will have call numbers starting PZ7.5 and then the first four letters of the author's name.
For Nonfiction: YA non-fiction is located throughout the children's collection, find the general call number area for your topic, and head over there to pick out the best books for your age group.

Search for articles about YA literature using these databases:

- Benefits of audiobooks for all readers
- To Your Brain, Listening to a Book Is Pretty Much the Same As Reading It
CSULB Library has children's audiobooks available. Audiobooks are available as downloads to personal devices using Libby.
- Using Libby
- Audio Books for Free
- Audie Awards Yearly awards for audiobooks, has YA, Middle and Younger kid categories.
- YALSA's Amazing Audiobooks
Starts up again April 27, 2023
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Teens' Top Ten
- Teens' Top Ten "The Teens' Top Ten is a "teen choice" list, where teens nominate and choose their favorite books of the previous year! "
- Next: Fiction >>
- Last Updated: Mar 7, 2023 9:53 AM
- URL: https://csulb.libguides.com/YAliterature
YOUNG ADULT & CHILDREN’S LITERATURE

Dashing Expectations: On Malcolm Whyte’s “Gorey Secrets” and Nathalie Tierce’s “Pulling Weeds from a Cactus Garden”
Jessica McCort reviews Malcolm Whyte’s “Gorey Secrets: Artistic and Literary Inspirations Behind Divers Books by Edward Gorey” and Nathalie Tierce’s “Pulling Weeds from a Cactus Garden.”...
JESSICA MCCORT
ART & ARCHITECTURE

Stine Still Scares: A Conversation with R. L. Stine
Danielle Hayden discusses the writing process, horror, hobbies, and humor with R. L. Stine upon the release of his new children’s horror collection, “Stinetinglers: All New Stories by the Master of Scary Tales.”...
DANIELLE HAYDEN

A Clamor of Beings: Two New Translations of Felix Salten’s “Bambi”
Maddie Crum reviews two new editions of Felix Salten’s classic novel “Bambi.”...
MADDIE CRUM
AROUND THE WORLD

That Monster Which Prevaileth: On Andrew Joseph White’s “Hell Followed with Us”
Helena Gabrielle Ong reviews Andrew Joseph White’s new YA book, “Hell Followed with Us.”...
HELENA GABRIELLE ONG
GENDER & SEXUALITY
When a Revolution Tells Children’s Stories
Mina Khanlarzadeh reflects on the children’s stories impacted by the 1979 Iranian Revolution...
MINA KHANLARZADEH
Three Questions for Lizz Huerta Regarding Her Debut Novel “The Lost Dreamer”
Daniel A. Olivas talks with Lizz Huerta about her debut novel “The Lost Dreamer.”...
DANIEL A. OLIVAS
Four Questions for Frederick Luis Aldama Regarding His Bilingual Children’s Book, “Con Papá / With Papá”
Daniel A. Olivas talks with Frederick Luis Aldama about his new children’s book, “Con Papá / With Papá.”...

The Spectacle of Spectating: On Samantha Allen’s “Patricia Wants to Cuddle”
Ryan McIlvain reviews Samantha Allen’s new novel, “Patricia Wants to Cuddle.”...
RYAN MCILVAIN

So Much More Than Nigerian Harry Potter: On Nnedi Okorafor’s “Akata Woman”
Jonathan P. Lewis reviews the third book in Nnedi Okorafor’s Nsibidi Scripts series, “Akata Woman.”...
JONATHAN P. LEWIS

Weaving Words: The Magic of Diana Wynne Jones
Henrietta Wilson and Lydia Wilson survey the young adult fiction of Diana Wynne Jones....
HENRIETTA WILSON , LYDIA WILSON

The Forest for the Trees
Mitchell’s new book addresses the act of naming and its impact on the environment for all....
TIM CUMMINGS

A Fight for Survival: On Somaiya Daud’s “Court of Lions”
Iman Sultan reviews Somaiya Daud’s “Court of Lions.”...
IMAN SULTAN

Fear and Loathing: Urban Legends and Legacies of Power in “Fear Street”
Claudia McCarron takes a trip down “Fear Street.”...
CLAUDIA MCCARRON

Judith Kerr and the Challenges of Holocaust Education
Teaching a traumatic history through the work of a popular children’s author....
MELISSA UCHIYAMA

The Many Worlds in Between: A Conversation with Kenan Trebinčević and Susan Shapiro
Puloma Mukherjee talks to Kenan Trebinčević and Susan Shapiro about their new middle-grade book, "World in Between: Based on a True Refugee Story."...
PULOMA MUKHERJEE

Remembering Ramona and Beverly Cleary’s Attention to Childhood Emotions
Sadie Shorr-Parks takes a look back at Beverly Cleary's "Ramona Quimby, Age 8," recently rereleased by William Morrow....
SADIE SHORR-PARKS

The Anxiety of Coming (Back) Together
Jon Klassen’s new picture book asks the age-old question: what are other people for?...
JANET MANLEY

Generating Hope: Jack Zipes Republishes Anti-Fascist Children’s Book from the Early 20th Century
Jonathan Alexander talks with Jack Zipes about “Yussuf the Ostrich” and “Keedle, the Great.”...
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- Open Access
- Published: 05 February 2021
Intergenerational caring: a systematic literature review on young and young adult caregivers of older people
- Barbara D’Amen 1 ,
- Marco Socci ORCID: orcid.org/0000-0001-9093-2167 1 &
- Sara Santini 1
BMC Geriatrics volume 21 , Article number: 105 ( 2021 ) Cite this article
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Metrics details
A Correction to this article was published on 22 March 2022
This article has been updated
The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers. To this purpose, the findings of this review are framed within the caregiving stress appraisal model (renamed CSA model) elaborated by Yates’ and collegues, in order to highlight differences between young caregivers and the older ones.
Multiple databases including PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were used to carry out a systematic review of the literature. Additional references were retrieved from experts contacted and research knowledge. The selected articles underwent both methodological appraisal and contents analysis: for every article an appraisal score was calculated and themes and sub-themes were identified.
Out of the ten included studies three were mixed methods, six qualitative and one quantitative. Nine reached a high quality methodological score and one medium. Four main themes emerged from the content analysis: aspects of the caregiving relationship; effects of caregiving; coping strategies; recommendations for services, policy and research.
Conclusions
Selected studies explored practical features of the relationship between young caregivers and older family members (tasks performed, motivations, coping strategies) and highlighted both positive and negative outcomes on young people’s everyday life condition and future development. Nevertheless, these evidences were often limited to small samples that did not allow to make generalizations. More studies are needed including large samples in order to deepen the different aspects of caregiving and design tailored support services.
Peer Review reports
Family caregivers, or informal or unpaid caregivers, provide 80% of long-term care in Europe, representing the bulk of health and social care to older or disabled people [ 1 ]. About 17% of the population in Europe [ 2 ] and 18.2% in the U.S. [ 3 ] is responsible for providing long-term care to older and disabled relatives.
Recent demographic and epidemiological changes, e.g. the extension of life expectancy and the increasing share of older people with multiple chronic diseases, might determine the growth of health and social care demand, thus increasing the number of family caregivers needed [ 2 ]. In the family context, the provision of care can be considered as a continuum starting with caring about i.e. with low levels of care responsibility, moving on to taking care, i.e. increasing care responsibility, up to providing intense and regular assistance. According to the literature, family caregivers are classified as “primary caregivers”, i.e. persons who provide the majority of caregiving tasks [ 4 , 5 , 6 , 7 ]; “secondary caregivers”, i.e. carers who assist primary caregiver in making decisions and complete his/her hands-on care [ 8 ]; “tertiary caregivers”, i.e. carers providing periodical and additional support to primary caregiver and do not make decisions on the cared recipient but help with issues do not directly concerning healthcare e.g. grocery and homework [ 9 ]. Finally, “auxiliary caregivers” provide an extra-support to primary caregivers for bettering the assistance: they provide companionship to the care recipients (e.g. grandparents), try to meet their emotional needs and participate in social activities with them [ 10 ].
As regards the tasks, the family caregivers perform, on a voluntary basis, a wide range of activities requiring different levels of effort, from company to help in carrying out the activities of daily living (ADLs) up to psychological and emotional support. The effects of care on different life realms of caregivers have been largely documented by the literature, such as anxiety and depression [ 11 ], relational strains [ 12 ], social isolation that may lead to perceived stress and loneliness [ 13 ]. Moreover, providing care and exposure to the suffering of a loved one can increase the risk for psychological and physical morbidity [ 14 ].
Despite the increasing number of male caregivers [ 15 ] the primary family caregiver is typically an adult and almost always a middle-aged woman [ 16 , 17 ]. Nevertheless, in developed countries several changes in the labour market and in family settings, e.g. increasing number of employed women, lack of strong family networks, living in single parent families [ 18 ] can turn young people into family caregivers. Sometimes, young family caregivers help adult relatives, i.e. their parents, and provide assistance to a frail or disabled family member, e.g. grandparent or sibling [ 19 ] thereby playing the role of auxiliary caregivers [ 20 , 21 ]. However, parents might need care themselves because of mental illness and/or physical disability and, in this case, young children have to take on the role of primary caregiver [ 19 , 22 , 23 ].
The definition of young caregiver differs across countries, according to the level of awareness of the civil society and of research carried out on the topic [ 24 ]. In the literature, there are different interpretations concerning the age brackets identifying a caregiver as young. In fact, there are more [ 25 , 26 , 27 ] and less extensive interpretations of the age range identifying both young caregivers [ 28 , 29 ] and young adult caregivers [ 19 , 25 ]. This heterogeneity could make it difficult to compare findings from different studies, as deepened in the Methods section.
A second difficulty is the low level of self-awareness; many youngsters, indeed, do not recognize themselves as family caregivers [ 30 , 31 ]. This can happen because their culture of affiliation takes it for granted that they have to cover this role in the family, or because caring is considered as an extension of family relations [ 32 ]. Poor self-awareness may lead to a third problem: identification, which could entail resultant difficulties for recruitment and enrollment of young caregivers in research and support programs [ 18 ].
Even though there is still a dearth of quantitative cross-national studies on young family caregivers, several statistics and surveys at national level provided important information for grasping the dimension of the phenomenon, though taking into account different age ranges and, moreover, not allowing a full comparability of findings. For example, in the U.S. one fifth of caregivers was aged between 18 and 34 [ 3 ], in Canada over 1 million youth between the ages of 15–24 years (28.2% of the whole population in that age range) provided some kind of unpaid child and elder care [ 33 ], while in Australia one in twenty people (5.6% or 151,600 persons) aged 15–24 years were young caregivers [ 34 ].
Concerning Europe, in the last decade a growing attention has been paid to young caregivers, particularly in the UK, where, in 2011, there were 178,000 unpaid young caregivers (5 to 17 years-old), i.e. 19% more than in 2001 [ 35 ]. A recent cross-national survey [ 36 ] carried out in six European countries (Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the UK) showed that out of 9,298 respondents, 28% were adolescent young caregivers (aged 15–17). A further exploration of the same database showed that 16.9% of adolescent caregivers aged 15–17 were caregivers of grandparents [ 37 ], suggesting the need for proofing the experience of young and adolescent caregivers of older relatives. Regardless of the age of the care recipient, when in the household a situation of disability and/or a chronic health condition occurs, young people may increase their level of involvement in carrying out basic domestic chores such as cleaning and tidying and they can start to help family members in need of care perform the activities of daily living e.g. dressing, eating, washing, up to provide support through medical care [ 38 , 39 ]. When the person in need of care is old, young people are pushed to provide care by the unavailability or unwillingness of the adult family members. Thus, young people provide care for contributing to the family ecosystem and/or in response to a request of parents, especially when the latter are working caregivers [ 40 ].
Young caregivers of older care recipients perform a wide range of caring activities: personal hygiene and meal preparation [ 40 , 41 ], help for instrumental activities of daily living, companionship and emotional support [ 42 ].
If, as highlighted above, the care activity can have a negative impact on the physical and mental health of adult family caregivers, this can happen all the more to young people and adolescents who, being still in a developmental age, can present psychological and emotional fragility [ 41 ]. According to the literature, young caregivers identify significant worries and problems in relation to their well-being, and these come over and above any ‘normal’ adolescent difficulties [ 43 ]. In particular, they report bad physical health [ 44 ], high levels of stress [ 45 ], fear and nervousness [ 46 ]. Moreover, they can run the risk of depression [ 47 ] and mental illness [ 48 ] and experience health inequalities, social, educational and employment exclusion [ 28 , 49 , 50 ]. These findings are enriched by studies that compared young adult caregivers with their non-caregivers peers, in which caregivers had significantly higher levels of symptoms of depression and anxiety than non-caregivers [ 51 ]. Following this comparative approach between young adult caregivers and non-caregiving peers, one study stated that young adult caregivers appear to be at risk for impairment in sleep quality, which in turn might impact health [ 52 ]. Furthermore, young caregivers reported less reliance on problem-solving coping, higher somatization and lower life satisfaction if compared with non-caregivers [ 53 ]. Nevertheless, several studies pointed out even possible positive effects of caregiving on adolescent and young people, e.g. learning coping skills for the future, feelings of gratification, a closer relationship with the cared for person [ 42 ] and a greater empathy [ 29 ]. A recent study comparing the impact of caregiving among adolescent young caregivers of grandparents to adolescent caregivers of other care recipients (i.e. other relatives and friends) [ 37 ] showed that the quality of the relationship between the young caregiver and his/her grandparent can mitigate the negative impact of caregiving, e.g. frustration, sense of inadequacy and mental health problems. Despite the increasing number of young people providing assistance to their relatives across the world, the aforementioned studies representing an exception, young family caregivers are not sufficiently considered by the literature, especially those caring for older family members with functional disability, in most cases grandparents [ 21 , 37 ].
Objectives and conceptual framework
The main goal of this systematic literature review is to cover this gap in knowledge by exploring how scientific literature treats the topic of young and young adult caregivers of older relatives, from a methodological as well as a content-based perspective. Hence, a methodological appraisal was carried out and the findings of selected articles were then analyzed, in order to reply to the main research questions, as suggested by Petticrew et al. [ 54 ]:
What are the methodological characteristics of the articles included in this review?
What are the main findings that emerge from these studies?
In particular, what are the experiences, motivations, and caregiving impact of two groups of young caregivers of older relatives: children (or caregiving youth) under age 18 and young adult caregivers?
What are challenges and open questions that arise from the selected articles and that could suggest future research and policy directions?
The findings related to the last three research questions are framed in a specific conceptual framework, in particular the caregiving stress appraisal model (renamed CSA model) proposed by Yates et al. [ 55 ]. This model draws upon both the stress model presented by Pearlin et al. [ 56 ] and the appraisal model presented by Lawton et al. [ 57 , 58 ]. Given that the CSA model [ 55 ] is focused on caregivers of all ages, not specifically on young caregivers, it allows us to compare the caregiving experience lived by young (adult) caregivers described in the articles selected by this systematic literature review to the caregiving experienced by caregivers of other ages.
The conceptual framework
The CSA model [ 55 ] explores the relationships between caregiving stressors and caregiver well-being, measured in terms of risk of depression, in a representative community sample of disabled elders and their adult informal caregivers. This conceptual framework, as previously written, is based on the strengths of two different models: the stress model presented by Pearlin et al. [ 56 ] and the appraisal model elaborated by Lawton et al. [ 57 , 58 ]. The model proposed by Pearlin [ 56 ] treats stress as stemming from the way caregivers’ lives become organized and the effects of this organization on their self-judgments. According to this approach, stress is a consequence of a process including the socioeconomic characteristics and resources of caregivers and the primary and secondary stressors to which they are exposed.
In particular, primary stressors are hardships and problems anchored directly in caregiving, while secondary stressors are related to two categories: the strains experienced in roles and activities outside of caregiving, and intrapsychic strains, involving the diminishment of self-concepts. Coping behaviors and social support can potentially intervene as mediating factors at multiple points along the stress process. Lawton et al. [ 57 , 58 ] proposed a conceptual model that adds to the Pearlin findings the importance of the individual appraisal and reappraisal process. According to this, the appraisal of a caregiving stressor is a subjective process accounting for the social, cultural, and economic characteristics of the caregiver.
Furthermore the caregiving is a dynamic process that involves caregivers, care recipients and other psychological and relational aspects. Starting from the strengths of these two models [ 56 , 57 , 58 ], the CSA conceptual framework [ 55 ] links caregiving stressor, caregiving appraisal and potential mediators to caregiver well-being. In particular, this model is composed of five interrelated factors: 1) the variables of care recipient needs for care or “primary stressor” (i.e. cognitive impairments, functional disability and problems behaviours); 2) caregiver’s primary appraisal (i.e. hours of informal care, that is the response to the care recipient’s health conditions). This process includes both subjective elements (e.g. appraisal of the care recipient’s needs of care) as well as objective ones (e. g. measure of caregiving work); 3) mediators that could change the effects of the stressor on the caregiver’s well-being. These are classified as external (e.g. use of formal services) and internal (e.g. levels of global mastery, quality of the relationship between the caregiver and care recipient, and emotional support available to the caregiver). According to Lawton et al. [ 57 ], “mastery” could be defined as a positive view of one’s abilities and the related behavior during the caregiving process; 4) the caregiver’s secondary appraisal (i.e. the caregiver’s perception of being “overloaded”, that is the caregivers’ capability of determining their own feelings about caring); 5) outcomes, i.e. psychological caregiver’s well-being, measured by risk of depression.
According to this model, caregiving is a complex process in which two separate caregiver’s appraisals affect the relationship between the stressors and the outcomes. Hence, the outcomes of the caregiving experience are a subjective process, strictly related to the psychological, social, cultural, and economic characteristics of the subject. Furthermore, CSA model [ 55 ] highlights the association between the caregiver’s overload and consequent depression, and the poor quality of the relationship with the older care recipient, especially in case of cognitive and behavioural problems.
According to this conceptual framework, that is based on the experiences of caregivers of all ages, the authors discuss the findings of this systematic literature review in order to highlight differences related to the caregiving experience of young (adult) caregivers.
In order to answer the above mentioned research questions, the authors first carried out a methodological appraisal using the Mixed Methods Appraisal Tool (MMAT) [ 59 ], and then the contents of each selected article were analyzed thematically. As regards the methodological appraisal, MMAT is designed for the appraisal stage of systematic mixed studies reviews, i.e., reviews that include qualitative, quantitative and mixed methods studies, with the exclusion of non-empirical papers, such as review and theoretical papers. The MMAT includes criteria for appraising the methodological quality of five categories of studies: (a) qualitative studies, (b) randomized controlled trials, (c) non-randomized studies, (d) quantitative descriptive studies, and (e) mixed methods studies. For each study category, MMAT provides two groups of questions: 1) two screening questions aimed at exclude that the paper is not an empirical study and thus cannot be appraised using the MMAT; 2) five questions targeted to evaluate the methodological distinctive specific characteristics of the appraised study.
Each criterion is rated on a categorical scale: yes, no, and can’t tell. A quantitative appraisal score was calculated by applying the scoring system proposed by Pluye and colleagues [ 60 ]. According to them, the presence/absence of criteria (yes/no) may be scored 1 and 0, respectively. Thereafter, a ‘quality score’ can be calculated as a percentage: [(number of ‘yes’ responses divided by the number of ‘appropriate criteria’) × 100] [ 60 ].
In this systematic review, first and second authors independently appraised the methodological quality of each study; the results of each appraisal were compared and any disagreements were solved through intervention of the third author and discussion among the authors.
Finally, after calculating the above mentioned appraisal score for each article, we synthesize methodological quality results in three different categories:
Low score= < 35%
Medium score= from 36 to 70%
High score= from 71 to 100%
As regards the content analysis, in order to examine characteristics, conditions and needs of young caregivers of older relatives, the content of each article was analyzed adopting the constant comparison technique [ 61 ]. According to the latter, each study was read by each researcher independently and the contents are codified in order to highlight concepts that were raised from the study. Then, these codes were constantly compared with the findings of the other selected studies to the purpose of identifying common themes and conceptual categories. At the end of this analytical stage, the researchers compared the outcomes of their independent research in order to identify commonalities and to discuss any disagreement. The categories emerged from the studies were grouped according to their similarities into overarching themes, as shown in the section Results.
Search strategies
PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were accessed by the first author (B. D’Amen) on January 27, 2019, for the sake of conducting a comprehensive search using a combination of Boolean operators and terms related with the topic. Given that the focus of this review is the relationship between young and young adult caregivers and older care recipients, two different groups of terms were selected for the identification of the articles. A pilot search was conducted in the selected databases, after which some minor changes were made to correct search words. In particular, for the caregiver category we used the terms: young caregivers , young carers , young adult caregivers , young adult carers . Considering the care recipient category, we used the following terms: older family members , older people , older adults and elderly .
These two groups of terms were combined in search strings constructed using the Boolean operator “AND”. Following this search strategy, a total of 3,947 articles were identified through database searching, 26 additional articles were added through bibliographic research and researchers’ knowledge. From the 3,973 articles, 1,481 duplicates were identified manually and then removed. Four different eligibility criteria were applied for the selection of the articles. The first one was the age range of young and young adult caregivers. As Joseph et al. [ 38 ] stated, there is no single definition of both young and young adult caregiver. In particular, as already mentioned in the Introduction, the analysis of the literature on young and young adult caregivers reveals that there is quite a bit of variation in the definition of the age range of these categories of individuals. For example, Aldridge et al. [ 28 ] defined young caregivers as children, adolescents and teenagers under 18 years, while Beach [ 29 ] defined them as young people aged 14 to 18 years. Later, Fruhauf et al. [ 26 ] defined people aged 7 to 29 as young caregivers. The same happened for the definition of young adults. Dellmann-Jenkins et al. [ 25 ] have defined subjects aged 18 to 40 years as young adult caregivers, whilst Becker et al. [ 19 ] included in this category those aged 16 to 24.
Given these differences concerning the age brackets, the authors selected a wide age range, up to 40 years, in order to be as much inclusive as possible. Another eligibility criterion regarded the age of care recipients, set at 60 years onwards. Although there are commonly used definitions of old age (i.e. 65 years old), there is no general agreement on the age at which a person becomes old. Given this lack of a standard numerical criterion, in this literature review we adopted the cutoff point of 60 years to refer to the older population, according to the United Nations [ 62 ]. Moreover, the selected articles had to be focused on real life cases of caregiving, which means that, accordingly, studies merely focused on perceptions or beliefs about caregiving were excluded. Finally, this systematic literature review included articles written in English. These eligibility criteria were applied for the screening of the 2,492 studies. Thereafter, 2,192 articles were excluded through the analysis of both title and abstract and 300 full articles were assessed for eligibility. At the end of this selection process, the total number of articles included in the analysis was 10 (Fig. 1 ).

The PRISMA flow chart for reporting the study screening process
The three authors carried out the selection process independently: the first author reviewed 2,101 articles, the second author 250 and the third author 141 articles. The results of this selection process were checked by the authors independently. In particular, the screening process carried out by an author, say the first, was checked by one of the other two in order to verify the accuracy of the selection process described in the PRISMA chart [ 63 ]. Applying the eligibility criteria, each author ended up with the same results obtained by the colleagues.
This review includes 10 studies and their main methodological and content characteristics are described in the following section.
Study characteristics
Concerning the selected studies, six are qualitative, one quantitative and three follow mixed methods. Moreover, three studies adopt a comparative approach. In particular, Dellmann-Jenkins et al. [ 25 ] compared adult children and grandchildren as family caregivers; Dellmann-Jenkins et al. [ 40 ] explored differences between young adults who were primary caregivers to impaired older relatives and young adults who had yet to take on caregiver roles; Fruhauf et al. [ 26 ] analysed caregivers according to age.
Table 1 provides an overview of the main characteristics of the studies: data were extracted from each study by the three authors and the results were collected and classified by the first author.
The selected studies cover a time ranging from the late nineties to 2013. The sample size ranges from a minimum of six to a maximum of 80 subjects; three articles included in the sample even young caregivers’ parents [ 27 , 41 , 42 ], whilst the others were focused only on young caregivers. Concerning the characteristics of caregivers, the articles provide evidences on 255 young individuals, 190 females and 65 males. The age ranges from 7 to 40 years. The selected articles considered different types of caregiving, categorized on the basis of the amount of assistance provided and the related burden. Three studies [ 25 , 40 , 64 ] were focused on primary caregivers [ 4 , 6 ], four [ 27 , 41 , 42 , 65 ] on auxiliary ones [ 9 ], and three articles [ 5 , 26 , 29 ] included different types of caregivers, with a prevalence of auxiliary ones. Out of a total of 255 caregivers included in the selected studies, 53% were primary caregivers, 15% secondary [ 8 ], 3% tertiary and 29% auxiliary [ 26 ].
On the other side, the number of care recipients was not always specified, so it is not possible to quantify the cases of multi-caregiving. The age of the cared-for older people ranges from 60 to 96 years and the sex was specified only in three articles [ 27 , 65 ], whilst in the other studies this was not reported, or can be partly deduced from the relationship between caregiver and care recipient. Concerning the type of pathology/health issues, two articles [ 5 , 25 ] did not provide information, whilst two more [ 29 , 41 ] were focused on care recipients with Alzheimer’s disease or dementia. The remaining studies concerned cared-for older people having various pathologies, cognitive or physical limitations.
Methodological and quality appraisal
As previously written, the methodological appraisal was carried out through the MMAT, the critical appraisal tool developed by Hong and colleagues [ 59 ].
According to the appraisal process described in the section methods, the results related to the methodological quality of the selected articles are summarized in the table below (Table 2 ).
Considering the score system, almost all selected articles had a high methodological quality, except for a qualitative study [ 65 ] that got a medium score. The main critical aspect of quantitative and mixed method studies concerned the sample size, considered too small to be representative of the target population. The limited number of individuals involved in these studies was justified by the authors of the articles with the difficulty of reaching young caregivers, due to the lack of awareness and knowledge around this issue. In their opinion, therefore, the small sample size should be considered as a limitation concerning the target population rather than a weakness of the research studies design in itself.
As regards the qualitative studies, the structure of the interviews was not always explained, and in the medium score article the description of the coding and analytical process was not so accurate, so it was not possible to understand the bias that could come from researcher beliefs.
Content and findings analysis
The review highlighted four major themes: aspects of the caregiving relationship, effects of caring, coping strategies and recommendations for services, policy and research. Each theme has been organized in sub-themes that are dealth with in depth hereunder.
Aspects of the caregiving relationship
Motivations.
The motivations pushing a young person to take on the care of an older relative are multiple and often interconnected, e.g. affection and bond with the older person [ 5 , 25 ] and the will to avoid his/her institutionalization (e.g. in nursing homes) [ 25 , 40 ]. In some cases, contextual/familiar conditions, including the lack of availability of assistance from more adult relatives [ 25 , 40 ] or being childless [ 25 , 40 ], can be drivers of youth caregiving. Considering the CSA model [ 55 ] adopted as conceptual framework of this review, these findings confirm the relevance of the personal motivations and of the subjective appraisal in the caregiving relationship also for the youngest. However, given that these motivations could be often multiple, in the case of young caregivers it is important to adopt a wider definition of the first and the second factors, that in the above mentioned model are related to the “variables of care recipients’ needs (or primary stressor)” and to the “primary appraisal”, by considering the role of external factors, such as the contextual/familiar conditions, that in some cases might have a role in the caregiving relationship and its effects for the youngest. Usually, the quality of the relationship with parents is not an aspect influencing the willingness to provide care, but young people often help simply because there is a practical need for assistance [ 41 ]. However, in the case of primary caregivers, there are differences related to their roles: grandchildren seem to be driven more by feelings of attachment, while children have feelings of filial obligation towards the cared-for person [ 25 ].
Perceptions and meaning
Caregiving is perceived as an experience for returning the care that older people had provided in the past to the youngsters [ 5 ]. In the case of auxiliary caregivers, those most involved in caring tasks were individuals with higher levels of cohesion and lower levels of conflict in intergenerational relationships, coupled with a positive history of interactions with their grandparents [ 65 ]. These findings suggest us to deepen the CSA model [ 55 ], by considering the quality of the relationship not only as “mediators” of the caregiving relationship, that might mitigate the impact of the stress, but also as a “driver” that contributes to foster the caregiving relationship between young or young adult caregivers and older patients.
Caregiving has also been defined as a case of role reversal, in which young caregivers find themselves caring instead of receiving care [ 5 ]. As for the perception of the subjects involved in the caregiving relationship, one study [ 27 ] highlighted how grandchildren recognize themselves as auxiliary caregivers, while mothers are perceived as engaged in more caregiving activities than fathers. The care recipients are accepted and understood by young caregivers because of their illness, though these perceptions are mediated by the information given by parents. Accordingly with the CSA model [ 55 ], in particular with the process of appraisal, these findings confirm the relevance of the subjective perceptions of the caregiving role experienced by the youngest as factors involved in determining the sense of the overall caregiving relationship. Thus, the latter is not a simple response to specific care needs, but includes subjective meanings that could play a significant role in providing care and in determining its effects.
Experience of caregiving and activities performed
The analysis of selected articles showed that young caregivers carry out a wide range of activities, ranging from helping the cared-for older people in performing ADLs [ 41 , 65 ] and instrumental activities of daily living (IADLs) [ 41 ], to companionship, assistance for shopping, personal hygiene, meal preparation [ 40 ] and emotional support [ 65 ]. Sometimes caregiving activities are based on parental directives [ 26 , 27 ], although in some other cases the youngest take the initiative to carry out certain activities that can be particularly appreciated by the care recipient, such as shaving of the legs [ 26 , 27 ]. Even though the variety of caregiving tasks is dependent on both grandchildren’s developmental/emotional condition and care recipients’ caring needs [ 27 ], young people provide more care when they are more attached to grandparents and when their parents experience a greater care burden [ 41 ].
Effects of caregiving
Negative effects.
The effects of caregiving are analyzed from the perspective of the current conditions experienced by young caregivers and in some cases, too, from the perspective of the implications for future life [ 5 , 40 , 41 , 42 ]. With regard to negative aspects stemming from the caregiving relationship, compared to the contingent living conditions, young people report feelings of anxiety, depression [ 26 ], anger and/or resentment [ 27 ], sadness mingled with compassion [ 27 ], and a sense of guilt, deriving from the fact that one often wanted to do something else [ 26 ].
Many young caregivers declare that they feel fear, a feeling often resulting from health conditions of the care recipient [ 5 , 25 , 27 , 64 ] and the feeling that these may worsen. These feelings can be accompanied by frustration, generated in young people by tasks that go beyond their skills [ 26 ]. Youngsters usually state that, although they know the technical terms related to the disease of the care recipient, they find it difficult to understand them [ 27 ]. Moreover, they do not understand what they must do in a dangerous situation [ 26 ] and they complained of a lack of information on the care recipient’s health condition [ 27 ]. Furthermore, young caregivers do not know the level of knowledge and skills required to provide care properly [ 41 ]. Accordingly with the CSA model [ 55 ], these findings confirm the relevance of the “primary appraisal”, focused on the care recipient’s health conditions, and the sense of “mastery”, considered as internal resources and “mediator” of the caregiving effects, in determining negative outcomes of the caregiving relationship. Frustration can be often caused by a decrease in free time to dedicate both to themselves [ 40 ] and to other relationships [ 5 , 25 , 42 ], including those with their own peers [ 42 ] and with other family members [ 25 ], which could make it difficult to establish intimate relationships [ 25 , 64 ]. Concerning young adult working caregivers, even the effects of caregiving in the professional sphere are manifested in feelings of frustration, whose origin is the lower possibility of career advancement, mobility [ 5 , 25 , 40 , 64 ], and greater absenteeism from work [ 25 , 40 ].
The negative effects of caregiving also affect self-image, with the perception of being different from other friends and relatives [ 5 ], and the feeling of experiencing a premature role reversal [ 5 , 64 ]. In addition, caregiving involves a greater difficulty in differentiating from the family of origin [ 64 ], an important issue for the construction of individual autonomy whose negative impact on the subsequent marital quality and career choices has been documented [ 66 , 67 ]. Caregiving has also particularly negative effects on the future life of young caregivers, leading them to develop negative views and feelings about ageing [ 42 ]. Particularly important is the role of fathers, in the construction of a sense of social responsibility: when the father provides care, young caregivers might develop less social responsibility and a more negative attitude towards assistance [ 41 ].
Positive effects
As for the positive aspects associated with care, young caregivers experience an improvement in their self-image, with a greater awareness of their abilities [ 5 , 25 , 26 , 40 , 64 , 65 ], feelings of gratification and satisfaction [ 42 , 65 ], and the acquisition of new skills [ 26 , 42 ]. Particularly positive effects on the relational context in which young caregivers experience benefits have been observed not only in the relationship with older people but also with other individuals [ 5 , 25 , 29 , 40 , 42 , 64 ]. Moreover, one study [ 29 ] underlines that providing assistance can have a positive impact on family relationships, especially with siblings, and greater intimacy within the mother/adolescent relationship [ 40 ].
The caregiving relationship can be at the origin of new relational possibilities: some young caregivers, in fact, to cope with the lack of time and not to deprive themselves of meaningful relationships, include friends in their daily care tasks/routines [ 5 , 26 ]. In these cases, caregiving is transformed from a factor of social isolation to an opportunity for integration by sharing personal life challenges with peers. Particularly positive effects concern the improvement of some behavioural characteristics, since caregiving can make young people wiser and patient [ 5 ]. Providing assistance can positively predispose them to provide care in the future as well, to their partner or children [ 5 , 41 ], and give them a more positive representation of long-term care for older parents [ 41 ] and greater sensitivity to ageing issues [ 5 ]. These findings suggest that positive effects of caregiving could be related to an active role of the youngest in managing the outcomes of the caregiving process, so the sense of “mastery” stated by the CSA model [ 55 ] is confirmed as an important mediator in reducing distress and in fostering the caregivers’ well-being.
Coping strategies
To mitigate the negative effects of caregiving, young caregivers could develop different strategies: the use of positive memories with care recipients [ 26 , 42 ], the minimization of their health conditions [ 26 ], positive self-evaluation of one’s role as caregiver, and humour [ 42 ]. The stress from the caregiving relationship is also managed through the adoption of particular habits, such as, for example, sports and religious activities [ 5 , 26 , 42 ], and by receiving support from friends [ 5 ].

Use of services and needs for support
Most young caregivers receive informal support from family, friends, neighbors and the church. Formal support is less frequent and concerns health services and participation in mutual help groups. Particular barriers for the use of formal services are represented by the lack of both economic resources and information regarding available services [ 25 ].
Concerning the needs expressed by young caregivers, the possibility of receiving emotional support from other caregivers of the same age, low-cost health services for older people, and their transport to facilitate daily activities [ 25 , 40 ], are particularly relevant. In particular, according to the CSA model [ 55 ], these findings confirm the relevance of emotional support as a mediator factor able to reduce the negative outcomes of the caregiving relationship. Only one among the selected papers [ 26 ] compared young grandchildren (aged 7–17) and adult children (aged 21–29) by focusing on caregiving outcomes and caregivers’ needs. This study suggests that younger grandchildren experienced more frustration, anger, guilt, anxiety while developing more behavioral (i.e. avoidance, outside activities) and cognitive coping strategies (i.e. focusing on positive memories, denial, humor) than adult grandchildren. Moreover, the different developmental stage that young and adult grandchildren were living influenced their need, e.g. young grandchildren needed help for understanding what the care recipient’s health condition may entail and adult grandchildren needed more intimacy, as they were in a phase of life in which it is important to build up intimate romantic relationships.
Recommendations for services, policy and research
The analysis of the selected articles highlighted implications for research and support services, in particular specific service delivery recommendations. Concerning formal services, it would be desirable to promote the creation of caregiver support groups for the whole family [ 26 ]; this support should be established within the educational system and facilitated by school counsellors [ 42 ] or offered through existing ageing social service providers [ 27 ]. To facilitate the use of services, it would be useful to carry out a need assessment, in order to propose targeted and effective interventions, and to promote a greater knowledge of any support groups present on the territory, especially if they are free [ 25 ].
These actions should help the management of different types of stressful factors, including: lack of time to develop relationships, difficulties in managing married life, managing both early career difficulties and psychological discomforts arising from premature role reversal [ 25 ]. Caregiver support groups and training workshops specifically designed for multigenerational caregiving families are needed. The latter, for example, would assist parents in explaining grandparents’ physical/cognitive decline to their children [ 27 ]. Although young caregivers need to be recognized, identified and supported as a distinct group of vulnerable children [ 26 ], information on the impact of caregiving should also be disseminated in the clergy, which appears to be a particularly significant source of spiritual support [ 25 ]. Furthermore, workplaces should also have specific counsellor services and flexible work opportunities to support young caregivers in building their professional lives and to better reconcile work and care responsibilities [ 25 ].
The studies included in this review analysed the experience of young and young adult family caregivers of older relatives, who represent an under-investigated category of family caregivers [ 21 ].
The mainly qualitative approach and research designs of the reviewed studies focused on small collectives give evidence of the scholars’ need for drawing the young family caregivers’ profile and the caregiving dynamics they experience. Given the different role of caregivers included in the selected studies (i.e. primary, secondary, auxiliary and tertiary), this literature review allows us to capture the experience of young and young adults caregivers of older people from different perspectives. Moreover, the reviewed studies have explored the practical aspects of the caregiving relationship (tasks performed, motivations, meaning, coping strategies), and the amount of care provided, thereby confirming the classification of young and young adult caregivers into primary [ 19 , 22 , 23 ] and secondary/auxiliary [ 20 , 21 ].
The comparative approach adopted by three studies [ 25 , 26 , 40 ] allowed us to better understand the experiences and the different effects of caregiving connected to the role played by young and young adult caregivers in the family environment (i.e. adult children vs grandchildren or caregivers vs non-caregivers), and to their age [ 26 ].
In accordance with the literature [ 16 , 17 ], the selected studies showed that among young family caregivers, females are more involved than males in caregiving activities.
As far as the impact of caregiving is concerned, this review increases the knowledge about the impact of caregiving on young caregivers’ psychological health [ 45 , 47 ] and social life [ 28 , 49 , 50 ]. Accordingly with the literature [ 68 ], this review showed that caregiving activities can have, even simultaneously, a positive and a negative impact on the youngsters’ different life realms. For example, some studies highlighted an improvement in self-image [ 5 , 25 , 26 , 40 , 64 , 65 ], and one of these [ 5 ] even reported a worsening on it. Some studies underlined negative effects on social life in and outside the family environment [5; 25, 64, 42], while others recorded positive ones [ 5 , 26 ].
Moreover, this review allowed us to raise the specificities of caregiving relationship between young people and older relatives in comparison to the caregiving experience of adult caregivers, as conceptualized in the CSA theoretical framework [ 55 ]. In this regard, the results suggest that the CSA model [ 55 ] is just partly applicable to young caregivers for reasons that are mainly due to the young age of the caregivers. In particular, according to this model indeed, the subjective appraisal of the elder’s need for care determines the amount of care which the caregiver thinks it is to provide, so assuming that caregivers are able to appraise the care recipient’s disability and the more suitable response to his/her needs. Conversely, young caregivers may not be able to make a realistic appraisal of the care needs, due to their young age and the dearth of experience and knowledge. Moreover, the CSA model [ 55 ] considers the “overload” a secondary appraisal, so assuming that caregivers are able to identify their level of overload by assessing their own situation and their feelings about caring. This perspective seems to be not appropriate for describing the experience of young caregivers and their level of self-awareness. Furthermore, given that this review highlights that the young caregivers provide more care when their parents experience greater care burden [ 41 ], the role of the parent’s burden in providing care should be taken into account for determining the hours of informal care (“primary appraisal” in the CSA model [ 55 ]) and the young caregivers overload (“secondary appraisal” in the CSA model [ 55 ]). Conversely, a common point of CSA model [ 55 ], which considers adult family caregivers, and the results of this review, focused on young family caregivers, lies in the quality of the relationship between the adult family carer as an element which can affect the perception of the caregiving experience and so the caregivers’ well-being.
The youngsters, even knowing the terms related to the cared-for illness and responding to the parents’ requests for help, often do not fully understand pathology risks [ 26 ]. This exposes them to greater feelings of inadequacy, fear, and frustration [ 26 ] than adult caregivers on whom they often rely for information acquisition [ 27 ], thereby confirming the findings of Järkestig-Berggren et al. [ 46 ]. These findings suggest to improve the Yates model [ 55 ] by highlighting the relevance of this mismatch between the care demand and the young caregivers’ knowledge and emotional resources as factors that could play an important role in determining the caregiving outcomes. Moreover, given that the awareness of this mismatch could encourage adult family members to reshape the requests to young caregivers, this could be an important factor able to reduce the young caregivers burden. Despite these theoretical consequences, this mismatch should be taken into account by professionals responsible for health and social care services and policy makers, in order to provide training interventions and support policies for young and adult caregivers. A relevant aspect that has to be added in the CSA model [ 55 ] is the relevance of supporting young caregivers in understanding the care recipient’s illness. This is related to a communication aspect that could be included in the set of factors stated by the CSA model [ 55 ] and directed at how caregivers appraise the needs for care (primary appraisal). Furthermore, as stated by the CSA model [ 55 ] and confirmed by Chappell et al. [ 69 ] the perceived social support, such as emotional support from family and friends, is strongly related to caregiver’s well-being and unrelated to the burden. Given that the emotional support is relevant also for young caregivers [ 25 , 40 ], providing interventions that address this aspect or specifically focused to develop skills to elicit desired emotional support from family and friends is an important aspect for improving caregivers’ quality of life even with caregiving burden in their lives.
Finally, in light of the insights on the role of the father caregiver in influencing children’s perception of caregiving experience and social responsibility [ 41 ], the relationship of the caregiver with other family members might provide an interesting reading key to identify those “family-embedded” factors that contribute to determine the effects of caregiving on young people in the present as well as in the future (e.g. the willingness to keep on providing care).
Weaknesses of the reviewed studies and suggestion for future research
A key-point in research on young caregivers is the lack of a homogeneous definition of the age range for identifying a young caregiver and of a categorization of different sub-groups of caregivers according to their age. The latter might indeed help scholars capture how motivation to care, needs for help and coping strategies change in different phases of life.
Conscious of this general bias, the selected studies were not without specific weaknesses. The first limitation is the small sample size and the co-presence of individuals carrying out different caregiving activities. Thus, future studies should consider whether to include in samples youngsters playing the role of primary, or secondary or auxiliary caregivers, or whether to include all these categories, and how to control the confounding factors that each role entails (e.g. amount of care and caregiving activities).
Secondly, in the selected studies the illness of the care recipient was not sufficiently analysed as a factor influencing caregiving activities and relationships. Hence, particular attention in the design of future studies should be directed to the impact of different types of care recipient’s illness on the youngsters’ perception of the assistance provided. Given that research has shown specific difficulties to care for older people with dementia [ 70 ], it could be interesting to understand whether cognitive and physical impairment generate different feelings and coping strategies among young caregivers [ 26 ].
Another aspect that could be further investigated concerns the context of care i.e. the grandchildren-grandparents housing condition. Cohabiting with the care recipient, indeed, was not within the sample inclusion criteria of the majority of the reviewed studies, and only one article treats this topic [ 27 ]. Nevertheless, in light of the articles cross-reading, living in a multigenerational environment where there is a grandparent in need of care seems to be a driver for involving the youngest in the caregiving activities, especially if the grandparent(s) suffer from cognitive impairment, dementia, Alzheimer disease [ 41 ]. Thus, further studies that deepen the association between the context of care and the involvement of the young family members in the caregiving activities are welcome.
Moreover, the sex gap is worthy of further study to understand possible differences in reacting to adverse or difficult situations due to care between girls and boys. The supports available for and needed by young caregivers were still inadequately explored. Conversely, the analysis of available public support services allows us to understand to what extent welfare state measures are able to identify and help young family caregivers.
The reviewed studies included in the samples mostly white individuals. Recent literature states that belonging to black and minority communities can be a driver for being a young caregiver [ 47 ] and underlines the influence of cultural patterns on the construction of the meaning of care by young family caregivers [ 71 ]. Thus, it would be important to develop studies involving different minority groups, as well as different countries, since all selected studies have been carried out in the U.S.
One study [ 25 ] highlighted how the perception of care burden can change in accordance with the type of relationship and of emotional bond with the care recipient (e.g. children or grandchildren of the cared-for person). Thus, more studies on the influence of the relational bond on the young caregivers’ experience would be welcome. Moreover, research based on larger and longitudinal samples would allow us to analyze how the caregiving relationship evolves over the years and the effects that it might produce on young people even after the death of the care recipient. In this regard, it is interesting to highlight that none of the reviewed studies investigates the association between the duration of care and the effects of caregiving. This is an aspect which deserves more attention from future studies.
It would also be important to plan research studies able to investigate the cases in which the caregiver provides care to more than one person, including the support offered to primary caregivers [ 65 ]. Furthermore, in light of the contradictory findings concerning the caregiving outcomes on youngsters’ physical, psychological and social well-being, future studies should search for possible factors that can favor the predominance of negative or positive effects and the extent to which the latter can compensate the former.
Suggestions for teachers, health and social workers
Particular attention should also be paid to spread awareness and knowledge of this phenomenon among health and social service professionals, in order to facilitate the identification of young caregivers, offer them support, and make their recruitment by researchers easier. These actions should be taken into account for improving the young caregivers’ well-being and should be added to interventions focused on developing skills to elicit desired emotional support from family and friends, as argued by the CSA model proposed by Yates et al. [ 55 ] and Chappell [ 69 ]. An important topic for future interventions on young caregivers of older relatives will be to explore ways to help their self-identification as caregivers. Furthermore, future studies should consider the welfare and healthcare systems where the caring relationship took place, since this analysis could help us understand to what extent the reasons for caring are driven by exogenous and systemic factors (e.g. availability of services, tailored policies, informal care networks) or by personal ones (e.g. resilience, psychological sources).
Limitations
The searches of the articles were limited to five databases (PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost) accessed by the first author over a specific period of time (January 2019). In order to be more inclusive, the authors added studies selected through a bibliographic research. Moreover, the terms and the Boolean operator applied might not be comprehensive: in particular, specific terms related to the subjects, such as “senior”, “grandparent”, “grandchildren”, “children”, and terms related to a specific pathology, were not included as search terms. Given that our search could not cover all the terms related to the main topic of this article, the results of this systematic review could be not exhaustive and, unknowingly and unintentionally, some papers might have been omitted. Another factor that contributed to the reduction of the included studies is the age ranges adopted for defining young (adult) caregivers and older care recipients. In particular, some studies did not exclusively concern the relationship between young (adult) caregivers and older care recipients and include caregivers older than 40 years or care recipients younger than 60 years. Finally, a further limitation concerns the absence of studies located in the USA, Canada, Europe and Australia among the selected manuscripts. In fact, although the interest of the social sciences for intergenerational relations was born in the USA at the end of the last century and it spread to Europe since the early 2000s, few studies have focused on caregiving relationships within the dyad young grandchild-grandparent (aged 60 and over) i.e. mainly between grandchildren and grandparents [ 72 , 73 , 74 , 75 , 76 ]. This represents a limit of this systematic literature review however not attributable to the authors who explored valuable and rich databases.
The phenomenon of young and young adult caregivers of older family members in need of care is still largely uncovered. Further reflections for finding “shared definitions” are needed, as well as quantitatively large sample and mixed-methods studies for deepening the different aspects of caregiving relationships that have been studied so far. In fact, as stated by the CSA model [ 55 ], caregiving is itself a complex experience whose effects and meanings go beyond the mere dyadic relationship between young caregiver and old care recipient, including the whole family. Considering the CSA model [ 55 ], assumed as theoretical model for framed the findings of this review, this article adds some specific factors related to the young age of the caregivers, such as the role of the parents’ burden in determining the young caregivers’ load and the difficulties presented by young caregivers in understanding the care recipient’s illness. These evidences could improve the CSA model [ 55 ] in order to better analyze the young caregivers’ well-being.
Availability of data and materials
The data are available in the articles included in the review.
Change history
22 march 2022.
A Correction to this paper has been published: https://doi.org/10.1186/s12877-022-02804-2
Abbreviations
Activities of Daily Living
Caregiving stress appraisal (model)
Instrumental Activities of Daily Living
Mixed Methods Appraisal Tool
Preferred Reporting Items for Systematic Reviews and Meta-Analysis
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Acknowledgements
The authors would like to thank researchers, professionals and organisations who contributed to the ME-WE project. In particular, authors thank the partner organisations of the ME-WE project (www.me-we.eu), namely: Linnaeus University (Sweden), coordinator; Eurocarers (Belgium); University of Sussex (United Kingdom); Carers Trust (United Kingdom); Kalaidos University of Applied Sciences (Switzerland); Netherlands Institute for Social Research (Netherlands); Vilans (Netherlands); National Institute of Health and Science on Ageing (IRCCS INRCA) (Italy); Anziani e Non Solo (Italy); University of Ljubljana (Slovenia).
The study was conducted in the framework of the ME-WE project, which has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 754702. This work was also partially supported by Ricerca Corrente funding from Italian Ministry of Health to IRCCS INRCA. This funding body did not play any role in designing the study nor in data collection, analysis and interpretation, nor in writing this paper.
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BD conceptualised and designed the study and drafted the manuscript. MS, SS assisted with the study design. BD, MS and SS analysed the data. All authors provided intellectual content to the manuscript, critical feedback and approved the final version.
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D’Amen, B., Socci, M. & Santini, S. Intergenerational caring: a systematic literature review on young and young adult caregivers of older people. BMC Geriatr 21 , 105 (2021). https://doi.org/10.1186/s12877-020-01976-z
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Cancer Treatment and Research Communications
A scoping review of literature: what has been studied about adolescents and young adults (ayas) with cancer.
This research mapped, organized and evaluated 161 scientific articles that were published from 2015 to 2020 around the world.
The articles were entirely analyzed and, as a result, three patterns in their purposes were identified.
To shorten what each purpose pattern embraces, a main title or category was assigned to each of them: "Awareness", "Action" and "Post-Action Evaluation".
By compiling this data, it was established 1) how many articles there are in each category; 2) how each category evolved over the last 5 years; and 3) which countries have more or less number of publications in each category.
To map, organize and analyze the articles published in the last five years about AYAs with cancer.
CAPES database and Google Scholar were searched to identify relevant studies from 2015 to February 2020. Eligible articles included empirical or theoretical research, quantitative and/or qualitative studies, targeted AYAs with cancer, addressed different topics related to AYAs such as unmet needs, hospital challenges, interventions or tools based on evidence, as well as political and socioeconomic aspects.
Of the 161 articles analyzed, 74 (46%) discussed the health system, including hospital dynamics, treatment and interventions during treatment; 63 (39.1%) discussed aspects or interventions that influence the quality of life and mental health of AYAs with cancer; 14 (8.7%) discussed issues related to sexual health; and 10 (6.2%) addressed social, economic and demographic problems of AYAs with cancer. Three types of purposes have been identified in the articles: 118 (73.3%) investigated variables in areas related to AYAs with cancer, aiming to increase the understanding of the phenomenon and the needs of AYAs; 18 (11.2%) intervened on the needs of AYAs with cancer through pilot studies or evidence-based interventions; and 22 (13.7%) aimed to evaluate an intervention previously performed or to evaluate an intervention based on evidence.
There is still much to be researched within the last two categories. In the last three years, these categories have been growing gradually and on a small scale.
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- http://orcid.org/0000-0001-5731-632X Fernando Jose Guedes da Silva Junior 1 ,
- Jaqueline Carvalho e Silva Sales 1 ,
- Claudete Ferreira de Souza Monteiro 1 ,
- Ana Paula Cardoso Costa 1 ,
- Luana Ruth Braga Campos 1 ,
- http://orcid.org/0000-0001-8948-7158 Priscilla Ingrid Gomes Miranda 1 ,
- Thiago Alberto de Souza Monteiro 2 ,
- Regina Aparecida Garcia Lima 3 ,
- http://orcid.org/0000-0002-2424-6510 Luis Carlos Lopes-Junior 4
- 1 Nursing Department , Universidade Federal do Piaui , Teresina , Piauí , Brazil
- 2 Faculty of Medicine , Centro Universitário Uninovafapi , Teresina , Piauí , Brazil
- 3 Maternal-Infant and Public Health Nursing Department , University of São Paulo at Ribeirão Preto College of Nursing , Ribeirao Preto , São Paulo , Brazil
- 4 Health Sciences Center, Nursing Department , Universidade Federal do Espirito Santo , Vitoria , Espírito Santo , Brazil
- Correspondence to Dr Luis Carlos Lopes-Junior; luisgen{at}usp.br
Introduction Since the WHO declared COVID-19 as a pandemic, the spread of the new coronavirus has been the focus of attention of scientists, governments and populations. One of the main concerns is the impact of this pandemic on health outcomes, mainly on mental health. Even though there are a few empirical studies on COVID-19 and mental health, so far, there is no systematic review about the impact of COVID-19 on mental health of young people and adults yet. We aim to critically synthesise the scientific evidence about the impact of the COVID-19 pandemic on the mental health of young people and adults.
Methods and analysis A systematic review will be performed through eight databases: MEDLINE (Medical Literature Analysis and Retrieval System Online), ISI-of-Knowledge, CENTRAL (Cochrane Central Register of Controlled Trials), EMBASE (Excerpta Medica Database), SCOPUS, LILACS (Latin American and Caribbean Health Sciences Literature), PsycINFO (Psychology Information) and CNKI (Chinese National Knowledge Infrastructure), from inception until 30 June 2020. No restriction regarding the publication date, setting or languages will be considered. Preliminary search strategies were carried out on 29 March 2020 and will be updated in June 2020. The primary outcomes will be the prevalence and the severity of psychological symptoms in young people and adults (>18 years old) resulting from the impact of COVID-19 pandemic. Study selection will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist. Pooled standardised mean differences and 95% CIs will be calculated. The risk of bias of the observational studies will be assessed through the Methodological Index for Non-Randomised Studies (MINORS). Additionally, if sufficient data are available, a meta-analysis will be conducted. Heterogeneity between the studies will be determined by the I 2 statistics. Subgroup analyses will also be performed. Publication bias will be checked with funnel plots and Egger’s test. Heterogeneity will be explored by random-effects analysis.
Ethics and dissemination Ethical assessment was not required. Findings will be disseminated through peer-reviewed publication and will be presented at conferences related to this field.
PROSPERO registration number CRD42020177366.
- public health
- adult psychiatry
- mental health
- Coronavirus
- Adult Psychiatry
- Mental Health
- Public Health Nursing
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http://dx.doi.org/10.1136/bmjopen-2020-039426
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Strengths and limitations of this study
This systematic review protocol reduces the possibility of duplication, gives transparency to the methods and processes that will be used, reduces possible biases and allows peer review.
We will provide evidence in order to inform, support and customise shared decision-making from the healthcare providers, stakeholders and governments in this context of global outbreak of the coronavirus.
This systematic review will be the first to evaluate critically the scientific evidence from the observational studies about the impact of the COVID-19 pandemic on the mental health of young people and adults.
The heterogeneity of the studies as well as the methodological appraisal and the probably reduced number of studies (due to the recent COVID-19 outbreak) might be the main limitations of this systematic review.
Introduction
Emerging and re-emerging infectious diseases are constant challenges for global public health. Recent cases of pneumonia in Wuhan, China, have led to the discovery of a new type of zoonotic coronavirus—an enveloped RNA virus, commonly found in humans, other mammals and birds, capable of causing respiratory, enteric, liver and neurological disorders. 1
Although COVID-19 has a low lethality of around 3%, its transmissibility is high, 1 with respiratory secretions being the main means of spreading SARS-CoV-2. 2 A study on observations of SARS-CoV-2 infections in China, using a networked metapopulation dynamics and Bayesian inference models, in order to infer epidemiological characteristics associated with COVID-19, estimated that 86% of all infections were not documented (95% CI 82% to 90%) before travel restrictions. The findings of this research showed that the rate of transmission of undocumented infections per person was 55% of documented infections (46% to 62%). However, due to their greater number, undocumented infections were the source of infection for 79% of documented cases. 3 SARS-CoV-2 is already circulating in 213 countries and territories worldwide, with 6 094 239 infected and 368 818 deaths recorded on 30 May 2020, with the USA being the current epicentre with 1 805 689 confirmed cases and 105 043 deaths so far. 4
Since the WHO declared COVID-19 a pandemic on 11 March 2020, 5 the new coronavirus spreading has been the focus of attention of scientists, government officials and populations. 6 One of the main concerns is the impact of this pandemic on health outcomes, especially on mental health. 7–9
Overall, in the event of pandemics or natural disasters, people’s physical health and the fight against the pathogen are the primary focus of attention of stakeholders/managers and health professionals, so the implications for mental health tend to be overlooked or underestimated. 10–12 However, measures taken to reduce the psychological implications of the pandemic cannot be minimised at this time, 13 14 mainly because the psychological implications can be more lasting and prevalent than the infection of COVID-19 itself, with repercussions in different sectors of society, resulting in important gaps in facing the negative issues associated with COVID-19. 10
Studies have suggested that the fear of being infected by a potentially fatal virus, of rapid spread, whose origins, nature and course are still little known, ends up affecting the psychological well-being of many people. 15 16 Symptoms of depression, anxiety and stress in the face of the pandemic have been identified in the general population. 17 In addition, suicide cases potentially linked to the psychological implications of COVID-19 have also been reported in some countries, for example, South Korea 18 and India. 19
In addition to the psychological implications directly related to COVID-19, measures to contain the pandemic may also consist of risk factors for mental health. In a review of the quarantine, researchers identified that the negative effects of this measure include symptoms of post-traumatic stress, confusion and anger. 13 Concerns about the scarcity of supplies and financial losses also cause damage to psychological well-being. 20 In this context, it also tends to increase social stigma and discriminatory behaviours against some specific groups that are more vulnerable. 10 21
The rapid spread of the new coronavirus throughout the world, the uncertainties about how to control the disease and its severity, in addition to the unpredictability about the duration of the pandemic and its consequences, are characterised as risk factors for the mental health of the general population. 22 This scenario also seems to be aggravated by the spread of myths, fake news and misinformation about infection and preventive measures, as well as by the difficulty of the general population in understanding the guidelines of health authorities. 23
Among the few population-based studies carried out to date about the implications of the COVID-19 pandemic on mental health, we highlight that the study held with the general population in China, including 1210 participants in 194 cities, stands out during the initial stage of pandemic. 17 This study revealed moderate to severe symptoms of anxiety, depression and stress in 28.8%, 16.5% and 8.1% of respondents, respectively. In addition, 75.2% of respondents reported fear of their family members becoming infected with the new coronavirus. Moreover, being a woman, student and having physical symptoms linked to COVID-19, or previous health problems, were factors significantly associated with higher levels of anxiety, depression and stress. 17
The world’s scientific community has been mobilising in record time to disseminate knowledge about COVID-19. On 13 February 2020, the vocabulary COVID-19 had already been added to the Medical Subject Heading (MeSH) terms as a subject heading index in Medical Literature Analysis and Retrieval System Online (MEDLINE) defined as ‘A viral disorder characterized by high fever; cough; dyspnea; renal dysfunction and other symptoms of a viral pneumonia. A coronavirus SARS-CoV-2 in the genus betacoronavirus is the suspected agent’. Since the first scientific publications on COVID-19 1 6 so far, the MesH Term ‘COVID-19’ has been cited in 17 301 publications on PubMed. However, studies on the implications for the mental health of young people and adults as a result of the new coronavirus pandemic are still scarce, as it is a recent phenomenon, but which point to important negative repercussions. Hence, following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols (PRISMA-P) checklist as guideline, 24 we propose a systematic and a reproducible strategy to query the literature about the impact of the COVID-19 pandemic on the mental health of young people and adults.
Research aims
The purpose of this systematic review is to critically synthesise the scientific evidence about the impact of the COVID-19 pandemic on the mental health of young people and adults.
Methods and analysis
Search strategy.
Search strategy will be performed in order to enhance methodological transparency and improve the reproducibility of the findings, following the PRISMA-P checklist. 24 Additionally, using the PICOS (Population/Intervention/Comparison/Outcomes/Study Design) acronym, 25 we elaborated the guiding question of this review, to ensure the systematic search of scientific literature: ‘ What is the impact of the COVID-19 pandemic on mental health of young as well as adult people?’ The PROSPERO—International Prospective Register of Systematic Reviews—registration number is CRD42020177366.
Studies will be retrieved from eight electronic bibliographic databases: MEDLINE via PubMed, ISI of Knowledge via Web of Science, Cochrane Central Register of Controlled Trials (CENTRAL), Excerpta Medica database (EMBASE), SCOPUS, Latin American and Caribbean Health Sciences Literature (LILACS), Psychology Information (PsycINFO) and Chinese National Knowledge Infrastructure (CNKI), from inception until 30 June 2020. No restriction regarding the publication date, setting or languages will be considered in this systematic review. In addition, secondary searches in other sources, such as Google Scholar and The British Library will be also carried out. The reference section of the included studies will be hand-searched for additional relevant studies. The search strategy will comprise only key terms according to a pre-established PICOS acronym. Two researchers (FJGSJ and LCL-J) will carry out the search strategy in all databases independently. Also, the bibliographic software EndNote ( https://www.myendnoteweb.com/ ) will be used to store, organise and manage all the references and ensure a systematic and comprehensive search.
First of all, we will identify the existence of specific subject headings index in each database (such as MeSH terms, Emtree terms, PsycINFO Thesaurus and DeCS-Health Science Descriptors) and their synonyms (keywords). The search terms will be combined using the Boolean operators ‘AND’ and ‘OR’. 26 Subsequently, the search strategy combining MeSH terms and keywords that will be used in MEDLINE (via PubMed) and adjusted to the other electronic databases as depicted in table 1 . The preliminary search strategies were carried out on 29 March 2020 and will be updated in June 2020. Additionally, this systematic review is expected to be completed in August 2020.
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Concepts and search items
Study selection
A summary of the Population (P), Interventions/Exposure (I), Comparators (C) and Outcomes (O) considered, following the PICO acronym, is shown in table 2 .
Inclusion and exclusion criteria
Regarding the study design, we will include only observational studies that investigated the prevalence and the severity of psychological symptoms of young people and adults (>18 years old) resulting from the impact of the COVID-19 pandemic. Nevertheless, studies that analysed mental and behavioural disorders due to the use of alcohol and other drugs will be excluded. Studies carried out with children, adolescents, pregnant women and the elderly people will be excluded. Randomised controlled trial (RCT), non-randomised controlled trial (NRCT), qualitative studies and the grey literature will also be excluded. This systematic review has no restriction with regard to the languages as well as settings of the target population.
Screening and data extraction
First, the screening of studies will be held from the information contained in their titles and abstracts by two independent investigators (FJGSJ and LCL-J). When the reviewers disagree, the article will be evaluated and, if the disagreement persisted, a third reviewer (RAGL) will make a final decision. Second, the full-paper screening will be held by the same independent investigators. In order to measure intercoder agreement in each screening phase, Cohen’s kappa will be used. Once consensus is reached on the selected studies, a standardised form based on previous studies 27–30 will be used for data extraction. Information to be extracted include four domains: (1) identification of the study (article title; journal title; impact factor; authors; country of the study; idiom; publication year; host institution of the study (community, hospital; university; research centre; single institution; multicentre study); conflict of interest and study sponsorship); (2) methodological characteristics (study design; study objective or research question or hypothesis; sample characteristics, eg, sample size, age, race, baseline characteristics; groups and controls; recruitment methods and study completion rates; stated length of follow-up; validated measures; statistical analyses, adjustments); (3) main findings and implications for clinical practice; and (4) conclusions. The same two reviewers will perform the data extraction independently. Discrepancies between the reviewers will be resolved either by discussion or, in the lack of agreement, by a third reviewer (RAGL).
Methodological appraisal
The internal validity and risk of bias for non-randomised studies, the Methodological Index for Non-Randomised Studies (MINORS), 31 will be used. This instrument MINORS contains eight items for observational studies: (1) a clearly stated aim; (2) inclusion of consecutive patients; (3) prospective collection of data; (4) endpoints appropriate to the aim of the study; (5) unbiased assessment of the study endpoint; (6) follow-up period appropriate to the aim of the study; (7) loss to follow-up less than 5%; and (8) prospective calculation of the study size. 31 All items from the MINORS tool will be rated from 0 to 2, with score 0 indicating that the information was not reported, 1 indicating the information was inadequately reported and 2 indicating the information was adequately reported. 31 The same two reviewers (FJGSJ and LCLJ) will perform the critical appraisal independently. Disagreements will be resolved by a third reviewer (RAGL). The inter-rater reliability will be rated using intraclass correlation coefficients. 32 The authors from the original articles will be contacted if additional information is required.
Assessment of publication bias
For assessing the publication bias, a funnel plot will be examined. Following the approach proposed by Duval and Tweedie, 33 the number of studies that are missing from the funnel plot will be estimated, if any. The effect size after the imputation of these missing studies will be estimated by the trim-and-fill method. 33 Egger’s test will also be performed. 34
Data synthesis and meta-analysis
Quantitative data from each study will be extracted and inserted into an Excel sheet by two independent reviewers. Statistical analyses will be carried out using the Statistical Package for the Social Sciences (SPSS), V.18.0 (SPSS).
Standardised mean differences (SMDs) and 95% CI will be used to calculate the effect sizes, as we expect that most of the observational studies 35 included in our meta-analysis have reported differences in psychological symptoms. All effect sizes will be transformed into a common metric in order to make them comparable across studies—the bias-corrected standardised difference in means (Hedges’ g). For continuous outcome measures, SMDs and risk ratio (RR) for categorical outcomes will be considered for the final assessment from individual studies. SMD was chosen as a measure of pooled results considering the likely variability in the measuring scales for continuous outcomes. 36 The effect size will be interpreted by Cohen’s proposal: 0.20 corresponds to a small effect size, 0.50 corresponds to a medium effect size and 0.80 corresponds to a large effect size. 37
A random-effects model will be selected under the assumption that studies included in the meta-analysis have been carried out with heterogeneous populations. Heterogeneity will also be tested by the I 2 statistic, which can quantify the heterogeneity ranging from 0% (no heterogeneity) to 100% (the differences between the effect sizes can completely be explained by chance alone), and the interpretations of the percentages are as follows: 0%–40% indicates potentially unimportant heterogeneity, 30%–60% indicates moderate heterogeneity, 50%–90% indicates substantial heterogeneity and 75%–100% indicates considerable heterogeneity. 35 To explore the heterogeneity across studies, subgroup analysis will be performed using a mixed effects model according to the following variables: age (young people vs adults), ethnicity (impact on mental health of patients from a specific ethnic group vs not) and psychological distress (mild vs moderate vs severe).
Quality of evidence
In order to determine whether the estimated effect size is reliable, the Grading of Recommendations Assessment, Development and Evaluation 38 system will be used. This system helps to evaluate the quality of evidence in the domains of risk of bias, consistency, directness, precision and publication bias through four categories: high, moderate, low and very low.
Patient and public involvement
Since this is a systematic review protocol, no patients as well as public are involved.
Ethics and dissemination
Due to the characteristics of this study design, the ethical evaluation was not required. The findings of this systematic review will be disseminated through peer-reviewed publication and will be presented at international conferences related to this field. Furthermore, any amendments to this protocol will be documented with reference to the saved searches and analysis methods, which will be recorded in bibliographic databases, for data collection and synthesis.
One of the strengths of the proposed systematic review is to apply a reproducible and transparent procedure for systematic review of the literature. In this protocol, we clearly describe the types of studies, participants, intervention/exposure and outcomes that will be considered according to the research question, as well as the data sources, search strategy, data extraction methods (including critical appraisal of the studies included) and data synthesis. 39 By publishing the research protocol, we reinforce the clarity of the strategy and minimise the risk of bias, namely, selective outcome reporting. 39 Also, we will focus only on the impact of the current COVID-19 pandemic on the mental health of young people and adults. These results shall provide evidence in order to inform, support and customise shared decision-making from the healthcare providers, stakeholders and governments.
Potential limitations of this systematic review might include the heterogeneity of the studies as well as methodological appraisal and the probably reduced number of studies in subgroup analyses (due the recent COVID-19 outbreak), which may influence the external validity.
COVID-19 is challenging our position in the world because we realise our connectedness to those around us regardless of geographical distance, yet at the same time, we become deeply aware of our individuality because the illness will be a threat to our physical and mental well-being. COVID-19, then, is as much as challenge for how we are to frame it from a psychiatric perspective as it is symptomatic of a public health crisis. Our responsibility as healthcare providers, including both clinicians and academics, is to ensure that our normativity about the ways we prescribe or caring the meaning and representation of COVID-19 to our own selves and the world, enhances our mental health rather than leads to a deterioration of what we can transform individually and globally from this juncture onward. 40
In this sense, the present systematic review will deliver relevant evidence about the impact of the COVID-19 pandemic on the mental health of young and adult people in order to address the gap in the literature as well as guide important strategies and health policy decision-making to the society.
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Twitter @scllm
Contributors FJGSJ and LCL-J conceptualised and designed the protocol, drafted the initial manuscript and reviewed the manuscript. FJGSJ, JCeSS, CFdSM and LCL-J defined the concepts and search items, data extraction process and methodological appraisal of the studies. APCC, LRBC, PIGM, TAdSM, RAGL and LCL-J planned the data extraction and statistical analysis. FJGSSJ, RAGL and LCL-J provided critical insights. All authors have approved and contributed to the final written manuscript.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Disclaimer The views of the authors do not necessarily reflect those of the NHS, NIHR or the Department of Health.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting or dissemination plans of this research.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
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The technology acceptance model and older adults’ exercise intentions—a systematic literature review.
1. Introduction
2. materials and methods, 2.1. search strategy, 2.2. inclusion and exclusion criteria, 2.3. study selection, 2.4. data extraction, 3.1. methodological approach and samples, 3.2. national differences, 3.3. age range of the older adults, 3.4. recruitment methods, 3.5. sports technology, 3.6. key constructs used in the reviewed studies, 3.7. the relationship between the technology acceptance model and the use of sports technology by older adults, 4. discussion, 5. conclusions, author contributions, institutional review board statement, informed consent statement, data availability statement, conflicts of interest.
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Share and Cite
Yau, Y.; Hsiao, C.-H. The Technology Acceptance Model and Older Adults’ Exercise Intentions—A Systematic Literature Review. Geriatrics 2022 , 7 , 124. https://doi.org/10.3390/geriatrics7060124
Yau Y, Hsiao C-H. The Technology Acceptance Model and Older Adults’ Exercise Intentions—A Systematic Literature Review. Geriatrics . 2022; 7(6):124. https://doi.org/10.3390/geriatrics7060124
Yau, Yi, and Chia-Huei Hsiao. 2022. "The Technology Acceptance Model and Older Adults’ Exercise Intentions—A Systematic Literature Review" Geriatrics 7, no. 6: 124. https://doi.org/10.3390/geriatrics7060124
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