Compliance in Adolescents With Chronic Diseases a Review J Adolesc Health 26379-388 2003

Introduction

Chronic diseases are divers broadly equally conditions that final for a year or longer and require ongoing medical attention or limit activities of daily living or both (one). The prevalence of pediatric-onset chronic diseases is gradually increasing around the world (2), contributing to both morbidity and mortality (3). The number of children and young adults (CYAs), children aged 0–24 years (4, 5), living with a chronic condition is growing due to higher survival rates (6). In the United States, 25% of the pediatric population is affected by a chronic condition and 5% by multiple chronic conditions (seven). In Europe, in 2016, 16% of the population aged between 16 and 29 had a long-standing wellness problem (8). In Italy, 91.8% of children aged 0–14 are in good health, ix.6% accept 1 or more chronic weather condition, 1.6% suffer from two or more chronic illnesses (9). In addition, children with complex weather have to deal with multiple transitions across providers and intendance settings (10), and those requiring engineering science support and home care bear even college costs (11–13). Furthermore, long-term chronic weather take a strong touch on wellbeing and crave ongoing management over a period of years or decades (14).

In the pediatric population, the nearly common pediatric chronic conditions, including those with medical complexity (15), are asthma, cystic fibrosis, type 1 diabetes mellitus, and chronic lung disease (16). In detail, children with the highest levels of medical complexity are estimated to be about 0.four–0.7% of all U.s. children (17). Therefore, it is of import to promote the quality of life of CYAs with chronic weather condition and their family members. This requires a life-long process of self-care or self-direction to preserve and better personal wellbeing, to maintain a good health-related quality of life, and to reduce health costs (18, 19).

The concepts of self-care and self-management have been used with considerable overlap and interchangeably amidst scholars (20). Self-management refers to the process that individuals with a health trouble intentionally use to gain control of their disease, in partnership with health professionals (21). Self-intendance is a more encompassing concept, referring to patients' ability and functioning of activities to achieve, maintain, and promote optimal health and wellbeing, including monitoring and managing acute and chronic health conditions (22, 23). WHO defines self-care as "the ability of individuals, families and communities to promote wellness, prevent disease, maintain wellness, and to cope with disease and disability with or without the support of a healthcare provider" (24). Co-ordinate to Riegel and Dickson (25), self-care is a naturalist controlling process based on patient experience (25).

In detail, the Center-Range Theory of Cocky-Care of Chronic Affliction identifies behaviors of self-intendance maintenance, characterized by those actions performed to maintain chronic condition stable (due east.g., taking medications every bit prescribed); cocky-care monitoring, concerning all those behaviors performed to keep signs and symptoms under control (e.one thousand., monitoring weight); and self-care direction, apropos the reaction to symptoms when they occur (east.g., call the healthcare provider in example of fever) (26, 27). However, this Middle-Range Theory was developed for adults. In the pediatrics, specially for CYAs, few theoretical models take been described, such equally the new comprehensive model of self-care in CYAs (28). This model emphasized that self-intendance is a very wide concept since information technology non merely includes personal skills only too healthcare actions provided past others. Others include informal caregivers (parents, relatives, friends, volunteers) who play a crucial role in chronic patient care, just besides formal caregivers (healthcare professionals) who provide specific professional support to families in terms of care management (28). Healthcare professionals cooperate with the patient and/or the family who maintain, if possible, the responsibility for their own care (29).

Self-care and quality of life, distress, and low are interrelated (18). On the one manus, meliorate self-intendance is associated with positive outcomes, such as more adequate illness control, greater patient safety, higher quality of life, and better personal evolution, which may lead to lower depression and distress (28, 30). On the other hand, psychological aspects can also be considered as influencing factors; for case, if CYAs are depressed, then they are more likely to neglect self-care behaviors (31, 32). Moreover, healthcare systems admit that cocky-care has a positive touch on on reducing chronic diseases and on reducing health costs (33). Indeed, in full general, chronic diseases requires a great amount of homo and economic resources (34). Managing chronic diseases requires specialized professional competences and wellness facilities suited to the health care pathways. Therefore, the chronic diseases during childhood have a strong social impact (35).

In addition, the health consequences are related to the kid'south historic period at the onset of chronic amending (36). Children with chronic diseases occurring during childhood showed a different outcome compared to those in which the diseases onset during their adolescence. Indeed, many aspects of adolescent daily life require a life-long process of cocky-care such equally the need for precisely scheduled daily medications, consumption of special dietary products, regular physical do, regular visits to healthcare providers and monitoring of blood glucose levels (37).

Furthermore, adolescents with a chronic disease may deal with the burden of independence incapability and the need to inquire for support from parents and other caregivers for nigh of their daily activities (37). Parents should encourage adolescents to develop self-esteem and avoid an excessively protective mental attitude (38). Boyhood is a primal development period for establishing lifelong health-related behaviors (39). Furthermore, patients with complex chronic diseases, forth with developmental changes in adolescence, face up challenges related to their wellness-related quality of life (40).

There is testify that cocky-care actions take a positive impact on the health of CYAs with complex chronic diseases, such as diabetes and fibrosis cystic (28, 41). Therefore, it is essential that these patients perform self-intendance (38, 42). The higher educational level of the population has generated a higher need for specific information and education regarding healthcare topics (43). This need has acquired an increase of CYAs' care competency for their own health and wellbeing (43). Assessing self-care in the pediatric population with chronic diseases may contribute to improve cocky-intendance activities and accost whatever deficiencies.

Therefore, the aims of this report were: (a) to retrieve and describe the literature on instruments (scales or questionnaires) that appraise self-care in CYAs living with chronic conditions; and (b) to evaluate the psychometric proprieties of the retrieved instruments that assess self-care in CYAs with chronic conditions.

Methods

Search Strategy

A systematic review was conducted to explore studies that described self-care scales for pediatric patients with chronic diseases. Search procedures followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for writing systematic reviews (44). The review was conducted through six databases: PubMed, Scopus, CINAHL, Embase, PsycInfo, and the Cochrane Library. In improver, a manual search was carried out to broaden the search. The study option was conducted in July 2021. The main keywords were "cocky-intendance," "cocky-management," "Scale," "Questionnaire," "Chronic Illness," "Pediatric," "Adolescent," "Young Adult," "Parents." Boolean operators—Non, AND, OR—were also used to narrow and widen the search. The search was conducted by two reviewers independently. The search strategy is described in Supplementary Textile.

Eligibility Criteria

The review included all types of peer-reviewed papers with no limits of fourth dimension or linguistic communication. Eligible studies for inclusion had to see the post-obit criteria: (a) any study published on a peer-reviewed journal; (b) patients with chronic diseases or complex chronic diseases; (c) patients aged betwixt 0 and 24 years; (d) studies that described or used a self-care evaluation scale; (due east) studies describing self-intendance in children or young adults and/or the parental function; (f) studies in any language describing self-care evaluation instruments.

The exclusion criteria were: (a) papers that did not include instruments that evaluated self-intendance; (b) cocky-care scales not developed for the population included in this review; (c) unavailable full-texts; (d) scales that did not describe self-care activities; (e) papers published in journal that were non peer-reviewed; (f) scales did not include at least one of the cocky-intendance dimensions (self-care maintenance, cocky-care monitoring, self-care management); (g) studies that evaluated only self-efficacy.

Study Pick

Firstly, duplicate records were identified and removed. Secondly, titles and abstracts were screened by two independent authors. The full texts of potential eligible studies were read to determine if the papers were eligible. In case of disagreement between the two authors, a third author was involved to brand the concluding decision.

Data Extraction and Synthesis

The following data were extracted: authors and twelvemonth of publication; country where the study was conducted; aim; study design; population (patient and/or parents age); blazon of chronic diseases and if mental diseases were included; scales or questionnaires; administration method; timing of administration; whether the musical instrument was validated; and findings. To describe and synthesize information on every instrument included in this review, the included papers were examined by focusing on the following information: name of the calibration; description of the scale or office of it; original author and yr; authors who included the scale in their paper; whether the scale was original or adapted; language; whether the unabridged calibration or only one of its dimensions were used; patients' age; chronic diseases; self-care maintenance, self-care monitoring, self-care management; the population that responded to questionnaire (patients, parents, or both), the manner the calibration and/or questionnaire was administered, and the conceptual model (25). The psychometric characteristics of each included instrument were analyzed using the COSMIN criteria (45). In improver, two researchers independently investigated the dimension of cocky-intendance reported in each scale (self-care maintenance, self-care monitoring, and self-intendance direction) according to the Centre-Range Theory of Self-Intendance of Chronic Illness (26).

Results

The study selection process is shown in Effigy ane. The initial search identified 3,326 records across the six databases and half dozen articles after a manual search. After removing the duplicates, two,545 manufactures were reviewed by reading the title and abstruse and 2,468 were excluded because they did non see the inclusion criteria. The full texts of the remaining 77 manufactures were read and, of these, 23 papers were included in the terminal review and analysis. The reasons for the exclusion of 54 papers are reported in Figure 1.

Figure 1. The Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) menstruum diagram showing the written report selection process.

Characteristics of the Included Studies

Most of the 23 studies included in this review were published in the last decade (n = twenty; 86.95%) and mainly conducted in North America (n = 15; 65.21%), followed by Asia (n = 5; 21.73%), Europe (n = 2; 8.69%), and United mexican states (north = 1; iv.34%) (Table one). 7 studies (xxx.43%) used a cross-sectional approach, ii (8.69%) were pilots, ane (4.34%) was a longitudinal observational study, i (4.34%) used a qualitative pattern, and 12 (52.17%) did non report their study design. The age of the written report samples ranged from two to 28 years, including children, adolescents and/or young adults. The samples of six of the 23 included studies (26.08%) included both children and their parents, whereas i study (iv.34%) only the parents.

Table 1. Characteristics of the articles included in the review.

Ix studies (39.13%) developed or used self-care instruments but for one type of chronic condition: spina bifida (northward = ane; 4.76%) (46), type 1 diabetes (due north = 3; 14.28%) (47–49), epilepsy (n = 2; 9.52%) (50, 51), asthma (due north = 1; 4.76%) (52), cystic fibrosis (n = i; iv.76%) (38), and congenital heart disease (due north = i; 4.76%) (twoscore). Ten studies focused on multiple chronic conditions such as kidney illness, systemic lupus erythematosus, inflammatory bowel disease, hypertension, renal transplant, and systemic lupus erythematosus (2, 29, 53–61). Four studies did not specify the chronic condition of their sample (57, 62–64).

A total of xiii studies (56.52%) considered neurodevelopmental and/or mental disorders (co-ordinate to the DSM 5 classification) as an exclusion criterion; ii studies (viii.69%) included also patients with neurodevelopmental and/or mental disorders, eight studies (34.78%) did not specify whether these disorders were considered exclusion criteria.

Xx-two of the studies included in this review reported the administration method of the instruments. The authors of four studies (18.ii%) specified that the questions were asked by an assistant researcher. With regard to data drove, seven studies (69.56%) used paper-and-pencil instruments administered in hospital settings, nine studies (39.13%) used online or telephone or mail interviews, while vii studies (69.56%) did not specify this. Nigh of the selected papers included information near the validity and reliability of the instruments (due north = 20; 86.9%), while in iii papers this information was non provided because they were based on previous validation studies.

Characteristics of the Self-Intendance Instruments

Overall, 11 self-intendance instruments focusing on pediatric patients with chronic atmospheric condition were described in the studies included in this review (Table 2). Vii instruments were adjusted, translated or modified from previous instruments developed by other authors (2, 40, 47, 51, 53, 55, 61). Five (45.45%) of the 11 instruments were specifically used to assess self-care of pediatric patients during the transition procedure from pediatric to adult care (29, 55, 59–61, 65). V (45.45%) instruments were published in English (38, 46, 52, 58, 59); one musical instrument was available in English and Spanish (9.09%) (56); one was published both in English and German (9.09%) (65); two were available in English and Chinese (18.18%) (29, 49); one musical instrument was both in English and Italian (9.09%) (62), and one is available in English language and Malaysian (ix.09%) (50). V (45.45%) instruments were entirely in line with the purposes of this review (38, 49, 58, 62, 65). Indeed, every dimension of the instruments included the concept of self-intendance and thus were analyzed in every part. The remaining instruments (north = 6; 54.54%) were analyzed only for those dimensions that were relevant to the aim of this review.

Table 2. Characteristics of the self-intendance measurement tools retrieved from this review.

The self-care instruments were developed for patients (n = 4; 36.36%) (49, 56, 58, 65), for parents (due north = 5; 45.45%) (38, 50, 52, 59, 62), or both (northward = 2; 18.18%) (46, 65). The target population of the instruments were adolescents/young adults (northward = four; 36.36%) (29, 46, 49, 56, 58, 65), children/adolescents (n = four; 36.36%) (29, fifty, 58, 59), children (n = one; 9.09%) (52). One instrument (nine.09%) (62) did not draw the target population. 5 instruments (45.45%) were adult for specific conditions. In particular, these instruments were: the Self-Care Independence Scale (SCIS) for cystic fibrosis (38), FAMSS (38, 46, 49, 50, 52) the Pediatric Epilepsy Medication Self-Management Questionnaire (PEMSQ) (fifty), Self-Management of Type 1 Diabetes in Adolescence (SMOD-A) (49), the Adolescent Self-Management and Independence Calibration II (AMIS II) (46). The remainder (n = 6.54; 54%) were developed for non-specific chronic conditions (29, 56, 58, 59, 62, 65). V of the 11 instruments were self-administered (45.45%) (38, 49, l, 62, 65), 3 instruments were administered by others, such every bit the research assistant (27.27%) (29, 46, 52, 56, 59) and i (ix.09%) did not specify this (58).

Four of the 11 instruments (36.36%) described the conceptual models of reference, the other seven instruments (63.63%) did not refer to any conceptual model. In particular, the UNC TRxANSITION scale used the self-decision theory as reference model (56), the TRAQ scale used the Transtheoretical model (65), the Family Asthma Direction System Scale (FAMMS) was developed according to the Family asthma management organization model (52), and the ON Taking Responsibility for Boyish/Adult Care (ON TRAC) used the Holistic model (58). Psychometric characteristics of the tools (Validity and Reliability).

The 13 studies reported in Table 3 explored the psychometric characteristics—validity and reliability—of the 11 measurement tools included in this review. Content validity was tested for 5 instruments (46, 49, 56, 57, 65), following the COSMIN taxonomy (45). Construct validity was verified through Exploratory Gene Analysis (EFA) for 6 instruments (29, 49, 50, 57–59, 65), and through Confirmatory Cistron Analysis (CFA) for 2 instruments (46, 57). Simply for the Star-ten musical instrument the construct validity was verified both through EFA and CFA (57). With regard to criterion validity, concurrent validity was used to analyze four instruments (38, 46, 54, 58), and among these instruments, predictive validity was verified just for StarX and TRAQ (54, 65). The Known-groups validity was tested for the TRAQ instrument (65). Furthermore, the correlation/regression between self-care and child age was explored in 7 instruments (29, 38, 50, 54, 56–59, 65).

Table three. Psychometric characteristics of the self-intendance tools.

Regarding reliability, internal consistency was verified in 11 instruments (29, 38, 46, 49, 50, 52, 56–59, 65). Test-retest reliability was tested in 4 instruments (29, 38, 46, 49), and inter-rater reliability was besides verified for the SCIS east the AMIS II scale (38, 46). With regard to the FAMSS and the UNC TRxANSITION Scale, inter-rater reliability was verified in addition to internal consistency (52, 56). Lastly, responsiveness and not-differential validity were non reported for whatever instruments.

Self-Care Aspects of Each Instrument

In this review, the self-care aspects/areas reported in the 11 instruments were described co-ordinate to Riegel'southward self-care theory focusing on the aspects of each of the three cocky-care domains (self-intendance maintenance, cocky-care monitoring, self-care management) by Riegel (Table 4). Every bit regards to self-care maintenance, all the eleven instruments included the aspect/area of medication adherence and merely the (UNC) TR(10)ANSITION Scale and The Parent STARx Questionnaire (STARx-P) included the aspect of treatment adherence (56, 59). Feeding was explored in three instruments: the UNC Tr(x)ansition scale, Transition Readiness Assessment Questionnaire (TRAQ) and Adherence Schedule in Transplantation-Proxy Kid (ASiT-PC) (56, 62, 65). The attribute of lifestyle was examined but in the TRAQ (65), whereas the prevention aspect was included in two instruments: FAMSS and ON TRAC (52, 58). The noesis of wellness-intendance services was explored in two instruments, the Parent STARx Questionnaire (STARx-P) and TRAQ (59, 65).

Tabular array iv. Self-care dimensions and aspects of each measurement tool.

With regard to self-care monitoring, the expanse of vital signs monitoring was explored merely in the Adherence Schedule in Transplantation-Proxy Child (ASiT-PC) and in the Adolescent Cocky-Direction and Independence Scale II (AMIS II) (46, 62). The signs and symptoms aspect was treated in the Self-Management and Independence Scale II (AMIS Ii) (46).

For the self-intendance management domain, merely one aspect (i.e., consulting) was described in four instruments: Successful Transition to Adulthood with Therapeutics = Rx (STARx) Questionnaire, (UNC) TR(x)ANSITION Scale, ON TRAC and The Parent STARx Questionnaire (STARx-P) (29, 56, 58, 59).

Discussion

In this literature review, 11 self-care instruments addressing CYAs with chronic diseases were identified. These instruments differ for pathologic contexts and age range. The instruments providing more valid psychometric measurements were AMIS 2 and STARx. These are also the instruments published more than recently (46, 57).

Although all the identified instruments included at least 1 of Riegel'southward self-care domains, merely one musical instrument, the SMODA, investigated all of the three cocky-care domains: self-care maintenance, self-intendance monitoring, self-care management (49). Every instrument included in this review explored self-intendance maintenance, focusing particularly on medication and treatment adherence. The importance attributed to autonomy in medication administration might be associated to the reward of reducing utilise of healthcare services (66). Nonetheless, few instruments focused on monitoring vital signs and symptom management. Concerning cocky-care monitoring, only one instrument investigated signs and symptoms monitoring, an important aspect to detect important health status changes. As regards the self-care direction area, the instruments explored mostly the consulting aspect, leaving very piffling space for the management of complications or acute exacerbations through spontaneous self-intendance strategies. Overall, the medical direction of a chronic condition is non new, probably along with paternalistic and directive guidance in the relationship betwixt healthcare providers and families (67), often associated with the passive decision-making of families allowing the provider to cull the course of action (68, 69). This attribute might reverberate the persisting belief in the monopoly on wellness of the healthcare providers (seventy), and a great trust assigned to healthcare professionals of reference, such as the nurse example managers (71).

Studies showed that also self-care monitoring and cocky-intendance direction is important. For example, Riegel et al. (27) describe how symptom monitoring affects self-care behaviors, underling the importance of symptom detection, estimation and response equally central elements of the self-care procedure (27). Sawin et al. (46) found that when CYAs monitored their signs and symptoms they achieved independence much earlier than others (46). Also Nazareth et al. (59) found that when CYAs responded promptly to signs and symptoms of exacerbation they became more than knowledgeable near their disease management (59).

Specific instruments were developed for the virtually common chronic diseases. In particular, the SMOD-A scale was developed for diabetes, SCIS for cystic fibrosis, FAMSS for asthma, PEMSQ for epilepsy, and AMIS Two for spina bifida (38, 46, 49, 50, 52). The decision to take an instrument for a specific disease might be due to the large prevalence of these diseases, mostly diabetes and asthma, in the CYA population (72, 73). Even so, even though having instruments for assessing self-care in CYAs with specific chronic diseases is fundamental, in that location are also many other chronic and sometimes rare conditions to take into consideration. Therefore, the development of a non-specific instrument for the CYA population with different chronic conditions, considering the main age stages, might represent a useful innovation.

Furthermore, in this review, two instruments were plant to exist more generic [i.e., (UNC) TR(x)ANSITION Scale and TRAQ)] designed for chronic diseases in general or immature adults with special healthcare needs (56, 65). Even so, these two instruments were focused on the skills required during the healthcare transition from pediatric to adult care services. Transition readiness reflects all the indicators (east.k., disease-specific knowledge, scheduling appointments) that young adults tin begin, continue, and finish the transition process, including those skills influencing self-care (74–77). Therefore, self-intendance might be considered an integral part of transition readiness in the context of a challenging transfer to the developed health care arrangement. To our knowledge, no instrument is currently available to assess self-intendance behaviors among CYAs of all ages aimed at exploring the shift of agency from family to autonomous self-care, regardless of the patient care context.

Moreover, also complex chronic diseases need to be considered. Co-ordinate to Cohen et al. (fifteen), these weather in childhood are characterized by four domains: (a) family-identified healthcare service needs, (b) one or more chronic clinical weather condition, either diagnosed or unknown, (c) severe functional limitations, and (d) highly projected utilization of health resources. CYAs with complex chronic conditions need standardized approaches, tools and more effective competence to manage the complication of these diseases (78). Therefore, it would exist useful to develop a specific self-care instrument for CYAs with complex chronic conditions.

Furthermore, the nowadays review analyzed besides the methods used to administer the instruments. Five instruments were self-reported since the respondents were in school-historic period or adolescents (38, 49, fifty, 62, 65). Four instruments asked likewise the parents to fill up in the questionnaire. This aspect might testify how the family maintain a primal and vital office in supporting both the children—during the pre and scholar historic period—and adolescents/young adults (79, 80).

Another aspect analyzed in the current review was the conceptual model underpinning each instrument. The conceptual models were specified in iv instruments, such equally the cocky-conclusion theory, the transtheoretical model, the holistic model, and family management of specific diseases such as asthma. Having instruments based on a theoretical framework, as the models reported above, is key to obtain sounder and valid instruments (81). Recently, a cocky-care model has been developed for complex chronic conditions (28). This model includes the affecting factors, cocky-care behaviors and outcomes, highlighting that the more the patients are engaged in self-care behaviors, the more the results are positive.

Implications for Practice

The findings of this review may help researchers identify instruments to assess the level of self-care in CYAs living with chronic conditions for inquiry purposes, as outcome measures for interventional studies, or every bit a basis for farther validation studies. Moreover, we recommend the use of cocky-care instruments in clinical practice. Although clinicians recognize the importance of promoting self-care in CYAs with chronic conditions, they need standardized approaches and psychometrically audio tools (78). Measuring a patient's level of cocky-intendance using an assessment instrument represents, for the clinician, the first pace to identifying educational gaps and factors hindering the appointment process (82). Healthcare providers play an important role in fostering autonomy using educational strategies that take into consideration developmental stages and family unit support (83–85). Educational interventions have resulted in improvements in wellness outcomes, knowledge related to the chronic status, quality of life, attendance at school, participation in social activities, and a decrease in health service interactions (86–88). In a second step, the patient could assume greater responsibleness for managing their health lone or with the aid of parents and healthcare professionals (89).

Limitations

The findings of this review should be considered in light of some limitations. Firstly, the current review explored the instruments that concerned self-care in CYAs in every context. Nonetheless, these contexts were plant to be very broad and the concept of self-intendance may overlap with other concepts such as healthcare transition from pediatric to developed clinical setting (56). Therefore, the instruments constitute could not exist considered totally comparable.

Secondly, the search strategy of this review did not include grayness literature. Therefore, unquantifiable instruments might have been missed. Thirdly, studies measuring self-care in CYAs with neurocognitive impairment and in those living with cancer were non included in this review. Although the authors of this review believe that these patients deserve specific considerations, important features of the cocky-care process may accept been missed.

Another limitation was the voluntary exclusion of the studies that assessed cocky-efficacy. Indeed, the aim of this review was to identify the instruments that evaluate cocky-care behaviors (maintenance, monitoring, management) rather than assessing confidence in self-care (xc). However, future quantitative studies could investigate the confidence aspect since the procedure of self−care implies that self−care confidence (in patients and caregivers) influences the entire process of self−care beyond the three dimensions of self−care maintenance, monitoring, and management (91).

Determination

This review analyzed 23 studies that described xi self-care instruments for CYAs. Merely one instrument assessed each aspect of self-intendance (maintenance, monitoring, and management) according to our definition. In item, nigh of the instruments were focused on treatment adherence within self-care maintenance and ignored the aspects of prevention, feeding, and lifestyle. Less attending was given to vital signs and symptoms monitoring, and to responses to exacerbations of chronic conditions. Therefore, information technology would be useful to investigate how wellness professionals are focused on these self-care dimensions while providing education to patients and their families. Furthermore, future research may develop a comprehensive musical instrument measuring all the dimensions of self-care beyond all chronic conditions, as well including those with medical complication. Future instruments might be based on "The comprehensive model of self-intendance in CYA with chronic conditions" (28). This model could guide to a global evaluation of cocky-intendance in relation to developmental age, besides because the parent's contribution and shift of agency.

Information Availability Argument

The original contributions presented in the study are included in the article/Supplementary Cloth, further inquiries can be directed to the respective author/southward.

Author Contributions

GS, VB, and VK fabricated substantial contributions to the conception and design of the systematic review, conducted the literature search, data extraction, and drafted the manuscript. RM gave a substantial contribution to the translation of the text, moreover, critically reviewed and revised the manuscript. AL and GM contributed to evaluated the psychometric proprieties of the tools retrieved, updating the reference list, critically reviewed, and revised the manuscript. OG, MS, EV, and ET helped in results analysis, drafting and critically revising the manuscript. ID'O conceived and supervised all the phases of the systematic review, drafted and critically revised the manuscript for important intellectual content. All authors approved the last version of the manuscript as submitted and agreed to be accountable for all the aspects of this written report.

Funding

This study was co-funded by the Italian Ministry of Health and the Eye of Excellence for Nursing Scholarship-Nursing Professional Order of Rome.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's Note

All claims expressed in this article are solely those of the authors and practise not necessarily stand for those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Whatever product that may be evaluated in this article, or claim that may be made past its manufacturer, is not guaranteed or endorsed by the publisher.

Acknowledgments

Nosotros thank Alessandra Loreti, Manuela Moncada, and Claudia Sarti for support in consulting some databases and collecting some full texts of the articles. Anna Bellingrath for supporting in the literature search, Giulia Gasperini for initially contributing to the blueprint of the enquiry project. They all work at the Bambino Gesù Children'south Hospital, IRCCS. Moreover, we thank Gennaro Rocco, Scientific Director of the Centre of Excellence for Nursing Scholarship of Nursing Professional Society of Rome for co-funding this report.

Supplementary Fabric

The Supplementary Material for this commodity tin can exist found online at: https://www.frontiersin.org/articles/10.3389/fped.2022.832453/total#supplementary-material

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