The lived experiences of children and adolescents with non-communicable disease: A systematic review of qualitative studies

Journal of Pediatric Nursing 51 (2020) 75–84

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Journal of Pediatric Nursing journal homepage: www.pediatricnursing.org

The lived experiences of children and adolescents with noncommunicable disease: A systematic review of qualitative studies Shefaly Shorey, Ph.D., RN, RM ⁎, Esperanza Debby Ng, BA Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Level 2, Clinical Research Centre, Block MD11, 10 Medical Drive, Singapore 117597, Singapore

a r t i c l e

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Article history: Received 9 October 2019 Revised 13 December 2019 Accepted 20 December 2019 Available online xxxx Keywords: Adolescents Asthma Chronic disease Diabetes mellitus Non- communicable diseases Meta-synthesis

a b s t r a c t Problem: Children and adolescents with non-communicable disease face more difficulties in achieving developmental milestones than their healthy peers, which affect their life and overall wellbeing. A non-disease-specific approach is important in identifying common challenges faced by children and adolescents across multiple noncommunicable diseases. Eligibility criteria: Qualitative studies reporting first-hand accounts of children and adolescents aged 4 to19 years with non-communicable disease. Sample: A library search was conducted in five electronic databases (CINAHL, Embase, PsycINFO, PubMed, Scopus, and ProQuest Dissertations and Theses) for original qualitative English language papers. Fifty-five articles met the inclusion criteria and were subjected to a two-step meta-synthesis. Results: Initial reports of negative emotional experiences and disease perceptions were mixed with gradual acceptances of their diseases and positive coping strategies. Children and adolescents with non-communicable disease all desired a normal life, but physical limitations often led to social exclusions and self-imposed restrictions. Although most were highly appreciative of the support received from family, friends, and healthcare providers, they still struggled with disease management, the need for autonomy, and the fear of illness disclosure. Conclusions: The impacts of non-communicable disease on children and adolescent's lives suggest a need for joint efforts between parents, clinicians, and educators to ensure children and adolescents' positive development of the self, acceptance and positive coping. Implications: This review is able to inform the development of future educational and psychosocial intervention programs in the school and healthcare setting, and also encourages a revision of education policies to be more flexible and accommodating. © 2018 Elsevier Inc. All rights reserved.

Background The global burden of diseases is undergoing a rapid epidemiological transition shift to non-communicable diseases (NCDs), especially in developing countries (Quigley, 2006; WHO, 2008). Depending on the definition used, the prevalence rates of pediatric chronic conditions now range from 13% to 27% (Van Cleave, Gortmaker, & Perrin, 2010). This increase from 1.8% in 1960 (Newacheck, Budetti, & McManus, 1984) can be attributed to medical advancements in detecting and prolonging the lives of such individuals (Perrin, Anderson, & Van Cleave, 2014). However, apart from prolonging lives, ensuring optimal quality of life for children and adolescents are also of utmost importance. Children and adolescents with NCDs often face more challenges than their healthy peers as they have to deal with their conditions, treatments, and learn self-management skills in addition to adjusting and dealing with age-group related developmental tasks (Nylander, Seidel, ⁎ Corresponding author. E-mail addresses: [email protected] (S. Shorey), [email protected] (E.D. Ng).

https://doi.org/10.1016/j.pedn.2019.12.013 0882-5963/© 2018 Elsevier Inc. All rights reserved.

& Tindberg, 2014). This often leaves them developmentally vulnerable in various domains (i.e. social, emotional, language, cognitive, and physical), which adversely affects their school readiness (Bell, Bayliss, Glauert, Harrison, & Ohan, 2016). Besides increased risks of poor educational outcomes (Barnett, Giallo, Kelaher, Goldfeld, & Quach, 2018), many of them also grapple with low self-esteem, negative body image, decreased social competence, and peer-related issues, which increase their risks for psychiatric disorders (Ferro & Boyle, 2013; Huurre & Aro, 2002; Martinez, Carter, & Legato, 2011; Turkel & Pao, 2007). Therefore, in order to ensure their positive wellbeing and understand their struggles, it is important to gain a better insight of their attitudes toward and experiences with NCDs. In the recent years, there has been a plethora of reviews targeting children and adolescents with chronic illnesses, comprising their transitional experiences from pediatric to adult healthcare (Fegran, Hall, Uhrenfeldt, Aagaard, & Ludvigsen, 2014), post-organ transplant experiences (Tong, Morton, Howard, & Craig, 2009), and school experiences (Lum et al., 2017). However, there are limited reviews that specifically explore the daily-lived experiences and attitudes of children and

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adolescents with NCDs. A recent review by Lambert and Keogh (2015) only investigated the experiences of feeling different among children and young people, aged three to 24 years, with long-term conditions, specifically diabetes, asthma, and epilepsy. However, other influences (e.g. physical and emotional) of their illnesses and attitudes toward them were not explored. Another review on the general experiences of adolescents with chronic illnesses by Venning and colleagues was conducted in 2008 (Venning, Eliott, Wilson, & Kettler, 2008). Although the perceptions and experiences of children aged four to 18 years with chronic illnesses had adequately captured during these 11 years, new qualitative studies have been published, which calls for an updated review. Therefore, this review aims to provide an updated insight and understanding of the attitudes and experiences of children and adolescents with chronic NCDs. Many existing qualitative reviews on the lived experiences of children or adolescents tend to focus on disease-specific management issues (Bailey et al., 2018; Chong et al., 2016; Chong et al., 2018; Jamieson et al., 2014), often overlooking their common generic life experiences and problems that are not based on a specific disease entity. Therefore, a non-categorical or non-disease specific approach was selected for this review as it considers the similarities, rather than the differences, of the generic attitudes and experiences of children across multiple NCDs (Stein & Jessop, 1982). This implies that the attitudes and experiences of different chronic NCDs that are analyzed under the same meta-synthesis might reveal common challenges and disruptions, which can inform future clinical practices, research, and healthcare policies.

Methods Aim and study design This review aims to provide an overview of the attitudes and experiences of children and adolescents with chronic NCDs from pooled qualitative literature in order to facilitate the growing understanding of the psychosocial needs of such individuals. In addition, the findings will be used to better inform future studies on the development of appropriate interventions. This qualitative systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (Liberati et al., 2009) (Supplementary material 1). A meta-synthesis adopts rigorous qualitative methods to integrate and synthesize results from existing qualitative studies through an interpretive process that involves researchers' subjectivities to generate novel inferences (Sandelowski & Barroso, 2007).

Search strategy A systematic library search was conducted by one of the authors (EN) in consultation with a librarian across five electronic databases (CINAHL, Embase, PsycINFO, PubMed, and Scopus) for English language articles that were published between each database's inception and January 2019. Grey literature was searched from ProQuest Dissertations and Theses. Utilizing the Population, Intervention, Comparison and Outcome (PICO) framework, the initial search strategy included keywords following the key concepts: “children” or “adolescents”, “chronic disease”, “congenital disease”, and “autoimmune disease”. The full search strategy for each database is provided in Supplementary material 2. A hand-search of relevant bibliographies was performed to identify potential studies that were excluded. A total of 6678 articles were retrieved, with 4905 remaining after the removal of duplicates. After screening the titles and abstracts for relevance, 457 full-text articles were assessed for eligibility, and 55 qualitative studies were finalized and included in the meta-analysis. The details of the selection process can be found in Fig. 1.

Literature selection and eligibility The EndNote X7 program (Clarivate Analytics, Philadelphia) was used to import articles and remove duplicates. Two reviewers independently screened the remaining titles and abstracts for relevance. Shortlisted articles were then screened for full-texts according to the stringent eligibility criteria and appraised for quality. All discrepancies were resolved upon discussion. According to the World Health Organization (WHO) (2019), the age cut-off for children and adolescents is 19 years and below. Thus, this review only included the first-hand accounts of individuals aged between four and 19 years. The minimum age cut-off of four years was used because children are only capable of expressing themselves verbally and coherently at that age (Luinge, Post, Wit, & Goorhuis-Brouwer, 2006). Studies that solely consisted of parents', healthcare professionals', or educators' accounts were excluded from the review. However, studies that reported children's or adolescents' accounts along with parents', healthcare professionals', and/or educators' accounts were included. Given the wide spectrum of chronic diseases, the eligibility criteria for types of NCD are guided by Rolland's (1987) psychosocial typology of diseases. Chronic disease can be categorized into four domains (onset, course, outcome, and degree of incapacitation) that may impact the self or the family system. Looking at disease onset, this review focuses on chronic NCDs that are either congenital or originated in childhood or adolescence. The course of the disease can be either stable or gradually progressive, but the disease outcome should not be fatal (i.e. unpredictable or a high likelihood of death). Therefore, studies involving individuals with cancer were excluded from this review. In addition, considering the wide variety of cancer types, their different management strategies, and varying prognoses, we recommend cancer patients' experiences to be reviewed separately. Lastly, when considering the degree of incapacitation, which determines the level of functional independence, children or adolescents with physical deformities and disabilities were excluded due to their differences in psychosocial needs compared to physically-abled individuals with NCDs. Therefore, studies involving individuals with cancers, physical deformities, birth defects (e.g. spina bifida, cleft palate), and physical disabilities were excluded. Study subjects with primary diagnoses of developmental (e.g. autism and attention deficit hyperactivity disorder) and psychological (e.g. depression and anxiety) disorders were also excluded. Overall, this review includes physically-abled children or adolescents with NCDs that meet the abovementioned criteria. Studies that focused on either one or multiple NCDs were all included. As this review is highly focused on each child's or adolescent's experience and perception of his or her chronic disease, studies examining the comorbidities of chronic diseases, adherence to treatments, transitions from pediatric to adult healthcare services, organ transplants, or treatment and intervention experiences were excluded.

Quality appraisal The quality appraisal of the finalized studies was performed by two reviewers independently using the ten-item Critical Appraisal Skills Program (CASP) (2014) tool. The tool assessed the clarity and appropriateness of the aim(s), methodology, design, sampling strategy, data collection, reflexivity of the researchers, ethical consideration, rigor of data analysis, statement of findings, and value of each research. Each item on the checklist was rated “Yes”, “Can't tell”, or “No” (CASP, 2014). As quality appraisal is believed to enhance the rigor of the synthesis and not to eliminate studies with less rigor, all studies were included in the meta-synthesis regardless of their methodological rigorousness (Walsh & Downe, 2005).

Identification

S. Shorey, E.D. Ng / Journal of Pediatric Nursing 51 (2020) 75–84

Records identified through PubMed, CINAHL, PsycInfo, Embase, and Scopus

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Additional records identified through reference lists (n=45)

Additional records identified through grey literature (n=381)

(n=6,252)

Records screened (n=6,678)

Screening

Duplicates removed (n=1,773) Titles and abstracts screened (n=4,905)

Records excluded based on the following reasons (n=4,448): -

Eligibility

-

Full-text articles assessed for eligibility (n=457)

Records excluded based on the following reasons (n=402): -

-

Included

Did not meet the selection criteria Duplicates Non-English language Reviews

Did not meet the inclusion criteria, or irrelevant contents or methodologies (n=325) Non-English language (n=9) Irretrievable full-texts (n=38) Reviews, editorials, commentary, conference abstracts (n=30)

Studies included in the metasynthesis (n=55)

Fig. 1. PRISMA flow chart.

Data extraction and synthesis Data extraction was performed in two steps. Firstly, guided by the PRISMA checklist (Liberati et al., 2009), two reviewers (EN and SS) independently extracted the study details (e.g. primary author, year of publication, and country where the study was conducted) and descriptive

data (e.g. sample characteristics, study aim(s), methodology, contexts, and themes) from each study. In the second step, verbatim and nonverbatim statements about children's or adolescents' experiences with chronic NCDs were extracted. The two reviewers then performed naïve reading on the extracted texts to gain a brief overview of the contents before synthesizing the data.

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A two-step procedure by Sandelowski and Barroso (2007) guided the data synthesis: 1) meta-summaries and 2) meta-synthesis. Metasummaries involve the extraction, separation, grouping, and abstraction of the text findings into statements. After data extraction, two reviewers independently grouped the experiences of children or adolescents with NCDs based on topical similarity. This provided an overview of potential confirmation, refutation, or extension of the findings across studies within a particular topical group. Being a highly subjective process, discrepancies were resolved through critical discussions among the reviewers until a consensus was reached. The second stage involved a meta-synthesis, which went beyond a mere descriptive synthesis to generate new concepts. Reciprocal translation was performed whereby in-vivo concepts or metaphors within each topical group were critically examined and determined whether they could be translated or integrated into one another. A further triangulation of the meta-summary findings was maintained through the constant targeted comparison of individual studies to reveal a new organized understanding of the perceptions and experiences of children with NCDs. Results All 55 studies were published between 1991 and 2018. While some studies did not report their research designs (n = 15), some common study designs included the grounded theory approach (n = 12), the phenomenological approach (n = 21), and the ethnographical approach (n = 2). Data collection was primarily through individual faceto-face interviews or focus group discussions and often accompanied by drawings and journal writings. The mean CASP quality score was 28 out of 30, with a range of 23 to 30. Despite the high average CASP score, the majority of the studies failed to address the potential for researcher bias. As such, studies that achieved a full score of 30 were mostly dissertations. The responses of 822 children and adolescents (350 girls, 273 boys, and 199 gender not stated), aged between four and 19 years old, with the majority being between 12 and 18 years old, were included. The majority of the studies focused on children with diabetes mellitus (n = 22), asthma (n = 14), cystic fibrosis (n = 4), and other chronic illnesses (n = 13) such as congenital heart disease, thalassemia, juvenile arthritis, and renal disease. Two studies consisted of mixed samples of children with chronic illnesses. The studies were predominantly conducted in North America (i.e. United States of America, n = 18; Canada, n = 6; Jamaica, n = 1), followed by the United Kingdom (n = 10), other parts of Europe (Sweden and Norway, n = 10), South America (Brazil, n = 5), Asia (n = 4), and Australia (n = 1). The detailed characteristics of each study can be found in Supplementary material 3. Unlike a descriptive synthesis, a meta-synthesis generates new concepts that provide novel and extensive insights into the daily physical and emotional experiences of children or adolescents with NCDs. The included studies encapsulated an array of emotional and psychosocial experiences, struggles, and coping strategies in children and adolescents with chronic illnesses, which are presented in five emerging themes: 1) influences of chronic illnesses, 2) daily conflicts and struggles, 3) normalizing and coping strategies, 4) sources of social support, and 5) hopes and fears for the future. An overview of all the included studies under each theme and subthemes is presented in Table 1. Influences of chronic illnesses Physical effects and limitations Across 23 studies, children with chronic NCDs were often breathless, tired, faint, dizzy, or in pain, even after doing menial tasks such as walking up the stairs (Childress, 2006). Such physical strains were compared to advanced aging: “You feel like you have turned 90 before you're 14” (Cartwright, Fraser, Edmunds, Wilkinson, & Jacobs, 2015, p737). For diseases that were more physically debilitating, children often reported difficulties with sports, physical education classes, and physical

activities: “All the other children can run around the playground, but I could only run halfway. If we're playing football, I'm usually the goalkeeper because I can't run up and down” (Birks, Sloper, Lewin, & Parsons, 2007, p21). With regard to physical appearances, scars were generally not seen as an issue (Anderson & Tulloch-Reid, 2017), and weight loss among diabetic children was also seen to boost the self-esteem of some (Birks et al., 2007). However, those with more drastic changes in physical appearances, such as hair losses and puffy faces, were often victims of bullying (de Souza & de Lione Melo, 2018). Feelings and attitudes toward their illnesses According to 25 studies, the emotional experiences of children varied throughout the courses of their diseases. Most were diagnosed very young and often had no recollections or understandings of what their diagnoses meant, with many of them saying, “I did not feel anything” and “I did not know what it was” (Christian & D'Auria, 1997; Lemes Cavini et al., 2016). As the implications of the diagnoses dawned on them overtime, some reported feeling sad: “I cried a lot when I finally understood. That was very difficult…” (Lemes Cavini et al., 2016, p807). Other commonly shared sentiments were feeling “annoyed”, “angry”, and “depressed” and having thoughts on giving up (Anderson & Tulloch-Reid, 2017; Da Cruz et al., 2018; Damiao & Pinto, 2007). Others perceived their illnesses as a “routine” or “burden”, with some sharing their fears of complications or treatments (Cotter, 2016; Dickinson & O'Reilly, 2004). Exclusion and disrupted social lives In 24 studies, children reported being jealous of their healthy, normal siblings, while their siblings were jealous of the special treatments and attention that they received from their parents (Anderson & Tulloch-Reid, 2017; Birks et al., 2007). Also, due to their illnesses, most of them perceived themselves as a burden and were unable to join the school sports team or hangout with their friends: “I go out with my friends and I have to stop and take a (blood glucose) test and so on. I don't want to spoil the fun at the moment. I don't want to interrupt my mates. They might think it's annoying…” [(Boman, Bohlin, Eklof, Forsander, & Torner, 2015, p11)] “I might not be able to keep up. There's no point going if I'm going to make the team lose.” [(Birks et al., 2007, p21)] Many adolescents expressed their desires to do what normal adolescents did, but these were impeded by lifestyle restrictions such as having no tattoos, having no piercings, and not drinking alcohol (Anderson & Tulloch-Reid, 2017; Birks et al., 2007). Education and school lives were also disrupted as many had to miss classes due to being sick, outpatient appointments, and hospitalizations (Birks et al., 2007; Childress, 2006; de Souza & de Lione Melo, 2018): “When I get sick… I can miss a lot of time in school… I'm trying to catch up… I was in the hospital as well, so I missed so much school then too.” (Cotter, 2016, p68). Daily conflicts and struggles A lack of autonomy and privacy In 13 studies, children and adolescents complained about being tethered to their diseases and not having senses of autonomy over their lives. The constant reliance on medications and treatments made them feel “trapped” or “controlled” by their diseases (Burke & Dowling, 2007; de Souza & de Lione Melo, 2018). Parents were often “overprotective” and “naggy”, especially in terms of diet and disease managements (Boman et al., 2015; Dickinson & O'Reilly, 2004). As demonstrated by one adolescent's comment, “Things like not having any freedom or always being followed and not having any privacy” (Birks et al., 2007, p24), young people complained about a lack of privacy. Even in

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Table 1 Overview of the included studies (n = 55) categorized into themes and subthemes. Themes

Subthemes

Included studies

Influence of chronic illnesses

Physical effects and limitations (n = 23)

Anderson & Tulloch-Reid, 2017; Birks, Sloper, Lewin, & Parsons, 2007; Cartwright, Fraser, Edmunds, Wilkinson, & Jacobs, 2015; Childress, 2006; de Souza & de Lione Melo, 2018; Ekra & Gjengedal, 2012; Foster, 2010; Francisco, 2008; Helvig & Minick, 2013; Ireland, 1997; Jonsson et al., 2017; Maslakpak, Anoosheh, Fazlollah, & Ebrahim, 2010; McConville, 2017; Moola, Faulkner, & Schneiderman, 2012; Mufti, Towell, & Cartwright, 2015; Sallfors, Fasth, & Hallberg, 2002; Sparapani Vde, Jacob, & Nascimento, 2015; Trollvik, Nordbach, Silén, & Ringsberg, 2011; Wallace, 2004; Winger, Ekstedt, Wyller, & Helseth, 2014; Woodgate, 1998; Yoos & McMullen, 1996; Yunak, Chontawan, Sripichayakan, Klunklin, & Jordan, 2009 Anderson & Tulloch-Reid, 2017; Christian & D'Auria, 1997; Cotter, 2016; Da Cruz et al., 2018; Damiao & Pinto, 2007; Dickinson & O'Reilly, 2004; Ekra & Gjengedal, 2012; Foster, 2010; Francisco, 2008; Helvig & Minick, 2013; Ireland, 1997; Knight, 2005; Lemes Cavini, Aparecida Gonçalves, Macedo Cordeiro, da Silva Moreira, & Rodrigues Resck, 2016; McConville, 2017; Meldrum, Tsao, & Zeltzer, 2009; Monaghan & Gabe, 2015; Moola, Faulkner, & Schneiderman, 2012; Mufti, Towell, & Cartwright, 2015; Nicholas, Picone, & Selkirk, 2011; Sparapani Vde, Jacob, & Nascimento, 2015; Suder, 2016; Trollvik, Nordbach, Silén, & Ringsberg, 2011; Wallace, 2004; Wang, Brown, & Horner, 2013; Woodgate, 1998; Woodgate, 2009; Yunak, Chontawan, Sripichayakan, Klunklin, & Jordan, 2009 Anderson & Tulloch-Reid, 2017; Birks et al., 2007; Boman, Bohlin, Eklof, Forsander, & Torner, 2015; Cartwright et al., 2015; Childress, 2006; de Souza & de Lione Melo, 2018; Fagerskiold & Mattsson, 2010; Foster, 2010; Francisco, 2008; Helvig & Minick, 2013; Herrman, 2006; Hughes, Savage, & Andrews, 2018; Huus & Enskar, 2007; Maslakpak, Anoosheh, Fazlollah, & Ebrahim, 2010; McConville, 2017; McDonald, 1991; Meldrum, Tsao, & Zeltzer, 2009; Moola, Faulkner, & Schneiderman, 2012; Mufti, Towell, & Cartwright, 2015; Sparapani Vde, Jacob, & Nascimento, 2015; Trollvik, Nordbach, Silén, & Ringsberg, 2011; Winger, Ekstedt, Wyller, & Helseth, 2014; Woodgate, 2009; Yunak, Chontawan, Sripichayakan, Klunklin, & Jordan, 2009 Anderson & Tulloch-Reid, 2017; Birks et al., 2007; de Souza & de Lione Melo, 2018; Dickinson & O'Reilly, 2004; Fagerskiold & Mattsson, 2010; Foster, 2010; Hughes, Savage, & Andrews, 2018; Huus & Enskar, 2007; Sallfors, Fasth, & Hallberg, 2002; Serlachius, Northam, Frydenberg, & Cameron, 2012; Suder, 2016; Wang, Brown, & Horner, 2013; Yoos & McMullen, 1996 Anderson & Tulloch-Reid, 2017; Burke & Dowling, 2007; Dickinson & O'Reilly, 2004; Foster, 2010; Francisco, 2008; Herrman, 2006; Jonsson et al., 2017; Knight, 2005; Lemes Cavini et al., 2016; Maslakpak, Anoosheh, Fazlollah, & Ebrahim, 2010; McConville, 2017; McDonald, 1991; Moola, Faulkner, & Schneiderman, 2012; Mufti, Towell, & Cartwright, 2015; Rydstrom, Hartman, & Segesten, 2005; Sallfors, Fasth, & Hallberg, 2002; Trollvik, Nordbach, Silén, & Ringsberg, 2011; Wallace, 2004; Wang, Brown, & Horner, 2013; Yoos & McMullen, 1996 Anderson & Tulloch-Reid, 2017; Boman et al., 2015; Brouwer et al., 2012; Cartwright et al., 2015; Christian & D'Auria, 1997; Cotter, 2016; de Souza & de Lione Melo, 2018; Dickinson & O'Reilly, 2004; Fagerskiold & Mattsson, 2010; McDonald, 1991; Meldrum, Tsao, & Zeltzer, 2009; Nicholas, Picone, & Selkirk, 2011; Rankin et al., 2018; Trollvik, Nordbach, Silén, & Ringsberg, 2011; Wang, Brown, & Horner, 2013; Lewis, 2007 Birks et al., 2007; Cartwright et al., 2015; Damiao & Pinto, 2007; de Souza & de Lione Melo, 2018; Dickinson & O'Reilly, 2004; Ekra & Gjengedal, 2012; Francisco, 2008; Herrman, 2006; Huus & Enskar, 2007; Ireland, 1997; Maslakpak, Anoosheh, Fazlollah, & Ebrahim, 2010; McDonald, 1991; Meldrum, Tsao, & Zeltzer, 2009; Sallfors, Fasth, & Hallberg, 2002; Wang, Brown, & Horner, 2013; Lewis, 2007 Babler & Strickland, 2015; Birks et al., 2007; Cartwright et al., 2015; Clayton-Jones, Haglund, Belknap, Schaefer, & Thompson, 2016; Cotter, 2016; Damiao & Pinto, 2007; de Souza & de Lione Melo, 2018; Ekra & Gjengedal, 2012; Francisco, 2008; Helvig & Minick, 2013; Hughes, Savage, & Andrews, 2018; Huus & Enskar, 2007; Ireland, 1997; Jonsson et al., 2017; Knight, 2005; Martin, 2011; McConville, 2017; Monaghan & Gabe, 2015; Mufti, Towell, & Cartwright, 2015; Nicholas, Picone, & Selkirk, 2011; Protudjer, Kozyrskyj, Becker, & Marchessault, 2009; Suder, 2016; Wallace, 2004; Woodgate, 1998; Yoos & McMullen, 1996; Yunak, Chontawan, Sripichayakan, Klunklin, & Jordan, 2009; Foster, 2010 Anderson & Tulloch-Reid, 2017; Babler & Strickland, 2015; Boman et al., 2015; Cartwright et al., 2015; Da Cruz et al., 2018; Helvig & Minick, 2013; Herrman, 2006; Huus & Enskar, 2007; McConville, 2017; Nicholas, Picone, & Selkirk, 2011; Olsen & Sutton, 1998; Protudjer, Kozyrskyj, Becker, & Marchessault, 2009; Rydstrom, Hartman, & Segesten, 2005; Salamon et al., 2012; Wallace, 2004; Woodgate, 2009 Anderson & Tulloch-Reid, 2017; Burke & Dowling, 2007; Childress, 2006; Herrman, 2006; Hughes, Savage, & Andrews, 2018; Protudjer, Kozyrskyj, Becker, & Marchessault, 2009; Salamon et al., 2012; Serlachius, Northam, Frydenberg, & Cameron, 2012; Foster, 2010 Anderson & Tulloch-Reid, 2017; Angstrom-Brannstrom, Norberg, & Jansson, 2008; Boman et al., 2015; Brouwer et al., 2012; Cotter, 2016; Da Cruz et al., 2018; Damiao & Pinto, 2007; Ekra & Gjengedal, 2012; Fagerskiold & Mattsson, 2010; Herrman, 2006; Huus & Enskar, 2007; Knight, 2005; Martin, 2011; Maslakpak, Anoosheh, Fazlollah, & Ebrahim, 2010; McConville, 2017; Moola, Faulkner, & Schneiderman, 2012; Nicholas, Picone, & Selkirk, 2011; Salamon et al., 2012; Serlachius, Northam, Frydenberg, & Cameron, 2012; Foster, 2010 Anderson & Tulloch-Reid, 2017; Birks et al., 2007; Brouwer et al., 2012; Burke & Dowling, 2007; Cartwright et al., 2015; Childress, 2006; Christian & D'Auria, 1997; Cotter, 2016; Damiao & Pinto, 2007; Ekra & Gjengedal, 2012; Fagerskiold & Mattsson, 2010; Huus & Enskar, 2007; Jonsson et al., 2017; Knight, 2005; McDonald, 1991; Nicholas, Picone, & Selkirk, 2011; Rankin et al., 2018; Salamon et al., 2012; Serlachius, Northam, Frydenberg, & Cameron, 2012; Wang, Brown, & Horner, 2013; Yunak, Chontawan, Sripichayakan, Klunklin, & Jordan, 2009; Foster, 2010; Lewis, 2007 Anderson & Tulloch-Reid, 2017; Angstrom-Brannstrom et al., 2008; Boman et al., 2015; Cotter, 2016; Jonsson et al., 2017; Lemes Cavini et al., 2016; McConville, 2017; Nicholas, Picone, & Selkirk, 2011; Olsen & Sutton, 1998; Serlachius, Northam, Frydenberg, & Cameron, 2012 Anderson & Tulloch-Reid, 2017; Babler & Strickland, 2015; Birks et al., 2007; Cartwright et al., 2015; Maslakpak, Anoosheh, Fazlollah, & Ebrahim, 2010; Meldrum, Tsao, & Zeltzer, 2009; Sallfors, Fasth, & Hallberg, 2002; Sparapani Vde, Jacob, & Nascimento, 2015; Suder, 2016; Wallace, 2004; Winger, Ekstedt, Wyller, & Helseth, 2014; Yoos & McMullen, 1996 Babler & Strickland, 2015; Birks et al., 2007; Boman et al., 2015; Cartwright et al., 2015; Cotter, 2016; Martin, 2011; Monaghan & Gabe, 2015; Moola, Faulkner, & Schneiderman, 2012; Suder, 2016; Winger, Ekstedt, Wyller, & Helseth, 2014

Feelings and attitudes toward their illnesses (n = 25)

Exclusion and disrupted social lives (n = 24)

Daily conflicts and struggles

A lack of autonomy and privacy (n = 13)

Dietary and disease management (n = 20)

Disclosure of illness (n = 16)

Unwanted attention and a lack of understanding (n = 16)

Normalizing and coping strategies

Acceptance and taking charge (n = 27)

Adherence and self-responsibility (n = 17)

Finding (n = 9)

Sources of social support

Constantly supportive family members (n = 19)

Encouraging and sensitive friends (n = 23)

Caring and informative healthcare providers (n = 10) Hopes and fears for the future

Fear and uncertainty (n = 12)

Hope for normal futures (n = 10)

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school, children were closely monitored by educators, as one girl reported: “The principal [arranged for] people to watch me” (Anderson & Tulloch-Reid, 2017, p5). Dietary and disease management As reported in 20 studies, one of the most common struggles faced, especially by diabetic children, was dietary and disease management (Burke & Dowling, 2007; Damiao & Pinto, 2007). Reasons for nonadherence were mainly due to temptation and peer pressure, as described by two children, “What you see your friends eating, you want to eat too” and “We are all young people and love sweet things and stuff like that” (Anderson & Tulloch-Reid, 2017). Others attributed it to forgetfulness or simply acts of defiance (Boman et al., 2015; Da Cruz et al., 2018). A few adolescents also struggled with the pain inflicted by needles: “I find it difficult to take the insulin when the shot goes in the same place. It hurts” (Lemes Cavini et al., 2016, p809). Disclosure of illness In 16 studies, some of the adolescents only disclosed their diseases to their closest friends as acts of accountability: “It's important because they need to know about my health… So, if they wonder why I'm not doing the things that they're doing, they'll know why” (Brouwer et al., 2012, p1135). However, most chose to conceal their diseases from teachers and friends due to a fear of being treated differently or bullied (Christian & D'Auria, 1997; Cotter, 2016). A few of them also gave reasons such as “annoying”, “too much explanation to give”, and “didn't really know what to say to them [friends]” in terms of disclosing their diseases to others (Christian & D'Auria, 1997; Dickinson & O'Reilly, 2004). Unwanted attention and a lack of understanding In some of the studies (n = 16), many children and adolescents were victims of bullying by schoolmates and felt that teachers were not understanding toward them: “I've got to go [to the toilet] sometimes through lessons… but the teacher said that, from now on, we're not having anyone getting out of a chair to go to the toilet…” (Birks et al., 2007, p25). On the other hand, a few expressed annoyances with unwanted pity or attention from friends: “I don't like the attention for something that I have no control over… It's not, like, something that I want attention for” (Dickinson and O'Reilly, 2004, p102). Normalizing and coping strategies In the process of seeking normality, all the children and adolescents adjusted their mindsets and adopted various coping strategies to better manage their diseases and lead optimal lives. Acceptance and taking charge As reported in most of the studies (n = 27), acceptance is usually the first step for children and adolescents to find ways to adapt to their diseases: “It never goes away. It is always a part of you, until you just accept it…” (Babler & Strickland, 2015). Courage and resilience to battle their diseases were also displayed in many accounts, with most emphasizing the importance of “being in control” (Damiao & Pinto, 2007). One adolescent said, “I used to get really upset about it, but then it just kind of gave me the determination to prove everyone wrong…” (Cartwright et al., 2015, p738). A positive mindset was also common among adolescents who decided to make the best out of their situations, with some saying that “It doesn't really affect me much” (Cotter, 2016). According to one adolescent, “It's boring being normal, so [it's] just like [a] little edge [that] you've got of being different” (Birks et al., 2007, p25). Some adolescents found purpose in their diseases: “I can tell a lot more people about it and let them understand” (Anderson & Tulloch-Reid, 2017, p8). Others adapted to their diseases by consciously avoiding rumination, ignoring what others thought, and doing normal activities: “I do everything. I play ball. I ride bike. Now, I'm driving my motorcycle. I lead my life normally” (de Souza & de Lione Melo, 2018, p4).

Adherence and self-responsibility According to 17 studies, as children grow older, their senses of responsibility and maturity increased, which led to many adolescents taking charge of their own medications and health (Babler & Strickland, 2015; Cartwright et al., 2015). As one of them mentioned, “If you regulate it properly, everything will be okay… You're living with it, so you might as well take care of it” (Anderson & Tulloch-Reid, 2017, p8). Many began to see the benefits of adhering to treatments and lost their initial streaks of defiance or rebellion: “Like now, I've grown up… I know it's [treatment] better for me… so I don't just decide to say no because I want to be a pain in the bum” (Cartwright et al., 2015, p739). Finding a balance In a few studies (n = 9), adolescents overcame dietary and physical restrictions by finding a balance in diet and exercise: “You can eat a little piece… You have to know your limit [so] you won't have too much trouble…” (Anderson & Tulloch-Reid, 2017, p7). Others mentioned modifying social or physical activities with friends to better accommodate themselves (Birks et al., 2007; Childress, 2006). Sources of social support Constantly supportive family members In most studies (n = 19), family members often provided illnessrelated support such as routine reminders, blood glucose monitoring, and being sources of information. The constant presence of family members was also a form of emotional support, providing children with senses of security, trust, and comfort, especially during hospitalizations: “You have access to the help you need. You feel safe with the family. They have lived with you since you got the disease, so they know how to do things, and they are always there” (Boman et al., 2015, p11). A few individuals also mentioned how their families had adjusted their lifestyles and diets to suit them: “After my diagnosis, they began eating with me, avoiding sugar… eating more salad… Everyone learned” (Da Cruz et al., 2018, p133). Encouraging and sensitive friends Most studies (n = 23) highlighted the vital role of friends in providing illness- and non-illness-specific support to children and adolescents (Burke & Dowling, 2007; Damiao & Pinto, 2007). For instance, one girl reported, “If I needed help, like, I can't give myself my own shot in my arm. If I wanted her to, she would do it for me…” (Brouwer et al., 2012, p1134). Socially supportive friends were highly appreciated and made coping with their diseases much easier as well: “They [friends] took the time to listen to the struggles that I'm going through and, you know, just be the friends that they are” (Brouwer et al., 2012, p1134). Additionally, knowing people with similar illnesses created senses of belonging among both children and adolescents and also provided an alternative source of information and help (Cartwright et al., 2015; Christian & D'Auria, 1997). Caring and informative healthcare professionals In a few studies (n = 10), healthcare professionals, especially nurses, were commended for being supportive, comforting, caring, and informative (Angstrom-Brannstrom et al., 2008; Lemes Cavini et al., 2016). One female adolescent shared, “They don't really ask about your medical life [but] about your life overall” (Anderson & Tulloch-Reid, 2017). However, a few adolescents expressed dissatisfaction with healthcare providers addressing their parents using “posh terms” instead of addressing them directly (Birks et al., 2007). Hopes and fears for the future Fear and uncertainty In some studies, (n = 12), children were afraid and uncertain of the future implications of their diseases: “I don't want to lose my foot, my

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hand, nothing. So, I am very worried about the future” (Anderson & Tulloch-Reid, 2017). Their fears were fuelled by a pessimistic and defeatist mindset: “They might find a cure after I die, and I pray that they do, but for my time being, there probably won't be anything found” (Babler & Strickland, 2015, p356). Hope for normal futures As reported in ten studies, the majority of children and adolescents yielded more positive outlooks of the future (Boman et al., 2015; Cotter, 2016). They remained hopeful for normal futures despite certain limitations in their career options: “There's something with computers, something I can do that's not too energetic” (Birks et al., 2007). A few even saw their diseases as opportunities to help others: “One of my biggest goals is to just either be a researcher or be an endocrinologist… I want to be able to do that for other people” (Babler & Strickland, 2015, p357). Discussion Children and adolescents expressed the physical, emotional, and psychosocial impacts of their diagnoses and their diseases on their lives while highlighting their daily struggles, challenges, and dilemmas that they faced in terms of autonomy, disease managements, illness disclosures, and unwanted attention. Their journeys in seeking normalcy evolved with personal growths and included adaptations to and acceptances of their diseases, taking charge of their diseases, and finding a balance. The adaptive roles of, constant encouragements from, and personal interactions with family members, friends, and healthcare providers were also essential in ensuring their positive psychological wellbeing. In this meta-synthesis, adolescents with chronic NCDs tend to experience breathlessness and fatigue from daily tasks, which reduced their functionalities and physical competencies and led to exclusion from physical activities. In Altintaş and Aşçi's (2008) study, reduced physical activity was linked to lower physical self-esteem, which is an important psychological component of an adolescent's overall self-esteem. Body image is also another major factor of physical self-esteem. A recent review (Pinquart, 2013) reported an overall less positive body image among adolescents with chronic NCDs; however, body image is a less prominent issue in this review. This could be attributed to differences in the sample group, in which adolescents with more visible illnesses such as obesity, scoliosis, and cystic fibrosis consisted the bulk of Pinquart's sample. On the other hand, adolescents in this review were less self-conscious of marks and scars, and a few even reported boosts in self-esteem due to weight loss from adjusted diets. The sentiments of children and adolescents toward their diseases varied at different phases. With most of them getting their diagnoses in their early childhoods, ignorance and a lack of maturity made them feel nothing. However, upon understanding their diseases' lifelong implications, most were sad, angry, and depressed and perceived their illnesses negatively. As they grew older, most adopted more positive mindsets, possessed greater senses of responsibility, and developed future-oriented coping strategies. This emotional pathway adheres to Kübler-Ross' model of the five stages of grief and loss (denial and isolation, anger, bargaining, depression, then acceptance), which postulates the progression of emotional states after a diagnosis of a chronic or terminal disease (Kübler-Ross, 1973). Fixation at different stages probably explains why some held negative perceptions and attitudes toward their diseases, while others had chosen to accept and cope with their diseases responsibly or even saw their diseases as opportunities to educate others. Nevertheless, a person's response to an illness should not just be classified into stages of denial or acceptance as it can form a label on the self and constrain one's adaptation efforts (Telford, Kralik, & Koch, 2006). Our results revealed that children and adolescents with chronic NCDs were highly appreciative and satisfied with the trusting relationships and support that they received from family, friends, and other

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social networks. Similarly, in other studies (Britto et al., 2004; Camara, Bacigalupe, & Padilla, 2017; van Staa, Jedeloo, & van der Stege, 2011), trust and senses of security within social networks emerged as protective factors from psychological distress, which are crucial to the positive developments and wellbeing of early adolescents. Adequate social support not only promotes better mental health but also aids the acceptance and self-management of a disease, treatment adherence, and developing appropriate coping strategies (Sawyer & Aroni, 2005; Vahedparast, Mohammadi, Ahmadi, & Farhadi, 2018). Although emotional support from peers and family members is more valued by adolescents (Camara et al., 2017), informational support and direct communication by clinicians are preferred in healthcare settings (Britto et al., 2004). As children mature, they increasingly want their own voices to be heard as well as the rights to privacy and confidentiality in healthcare consultations (Sawyer & Aroni, 2005), which corresponds with our review findings for the need of autonomy and privacy. Apart from addressing parents, healthcare providers should make conscious efforts to communicate directly with children and adolescents regarding their diseases in a simplified manner, which may increase their senses of autonomy and also encourage patient involvement and responsibility. Additionally, relationships with family and peers can be protective from stressors or pose as a stressors, especially when they overreact or minimize their problems (Camara et al., 2017), which corresponds to the complaints of overprotective parents and overly attentive friends in this review. Therefore, members of adolescents' social networks should be mindful of balancing the need for support and autonomy while ensuring a match between needs and help offered. Children and adolescents with chronic NCDs often get excluded from social activities due to poor physical health or self-imposed restrictions due to perceptions of being a burden to others. Their tendencies to face social isolation and lessen social opportunities hindered them from establishing positive peer relationships, which are important for developments and social adjustments (Sebastian, Burnett, & Blakemore, 2008). A review by Martinez et al. (2011) additionally reported decreased levels of social competence (quality of interaction with peers) among children with chronic NCDs compared to their healthy counterparts. With the rise in technology, educators and healthcare professionals can develop multimedia or technology-based programs that can boost children's or adolescents' interactions with others and increase their social competence without it taking a toll on their physical health (SingerCalifano, 2008). Furthermore, children with chronic NCDs often missed school due to medical appointments, treatments, or hospitalizations, which left them at risk of poor educational outcomes and delayed graduations and employments. Although adolescents in this review expressed their hopes for normal futures and desires to achieve typical milestones in their lives, Pinquart's (2014) review revealed that young adults with pediatric chronic illnesses tend to have lower rates of graduation, employment, income, and marriage. Therefore, educational institutes ought to provide more support by increasing curriculum flexibility, having make-up classes and/or career workshops, and/or providing online learning materials that are readily available and easily accessed (Blackmore, Hardcastle, Bamblett, & Owens, 2003). The ability of educational institutes to adapt and accommodate to the educational needs of children and adolescents with NCDs will be beneficial in helping them to attain their age-appropriate developmental milestones. Strengths and limitations This review gives a voice to children who are often disempowered by encapsulating the daily experiences of children and adolescents with chronic NCDs, highlighting their physical struggles, their emotional responses to their diseases, and the importance of social support in helping them to cope and self-manage. By using a non-categorical approach to screening articles, this meta-synthesis was able to generate

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insights that are valuable in informing future research and educational and healthcare policies to develop appropriate supportive interventions for this vulnerable population. This is further elaborated in the next section. The limitations of this review are that relevant studies may have been left out due to unclear titles or abstracts, poor indexing, and the inclusion of English language studies only. The review has a narrow inclusion criterion that excluded cancer-stricken, physically-disabled children, developmentally-disabled children, and children with communicable diseases. Therefore, to understand experiences and perspectives holistically, future reviews should include the abovementioned patient groups. Also, in this meta-synthesis, most of the studies consisted of children with diabetes, which may have caused a biased perspective. The wide age group in this review and more eloquent expressions of adolescents may undermine the experiences of younger children. Also, the included studies were mostly Western-based, with a severe lack of Asian studies.

Funding This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. CRediT authorship contribution statement Shefaly Shorey: Conceptualization, Data curation, Formal analysis, Writing - review & editing, Project administration. Esperanza Debby Ng: Investigation, Formal analysis, Writing - original draft, Project administration. Declaration of competing interest None. Acknowledgement

Implications for future research, practice, and policy Implications for future research were derived from the limitations of this review. Future studies evaluating the experiences of children and adolescents should consider analysing them according to different developmental stages to prevent an overshadowing of responses by a particular age group. More Asian studies should be conducted to compare cultural and environmental influences on the experiences of children with chronic NCDs. Since this review only included stable and nonfatal NCDs, future research should focus on fatal chronic illnesses to provide a comparison of needs. Driven by our findings, clinical implications involve the need to boost patient autonomy and involvement. Communication trainings should be implemented for healthcare professionals to facilitate direct communication between adolescents and staff using simple terms and avoiding medical jargons. Education policy makers should aim to meet the educational needs of and enhance the social competencies of children and adolescents with NCDs. While the awareness and values of inclusion should be advocated in schools, the adjustment and flexibility of curriculum are recommended. Currently, the most viable method to cater to disadvantaged students would be through multimedia and online learning, where lectures and learning materials can be easily accessed. Additionally, peer-support groups or workshops can also be conducted to equip children and adolescents with positive coping mechanisms and provide career guidance or essential skills to allay their fears and help to prepare them for the future. Overall, education and healthcare policy makers should aim to unite and collaborate with key support networks (i.e. family, peers, and healthcare providers) in educating and providing adequate support to children and adolescents with NCDs.

Conclusion This meta-synthesis explored and synthesized 55 qualitative studies regarding the lived experiences of children and adolescents with chronic NCDs. Being diagnosed with pediatric NCDs has debilitating effects and holds a lifetime of consequences for afflicted children and adolescents. With the turbulent developmental years and the increased vulnerabilities because of such diseases, joint support from family, peers, clinicians, and educators is crucial in promoting better psychological health and helping these children and adolescents to achieve important developmental milestones (i.e. graduating high school, career, and marriage) that are essential in adulthood. Supplementary data to this article can be found online at https://doi. org/10.1016/j.pedn.2019.12.013.

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