Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review
Valentina Biagioli1† 
Giuseppina Spitaletta1† Valeria Kania2 
Rachele Mascolo3 
Orsola Gawronski1 Annachiara Liburdi1 
Giulia Manzi1 
Michele Salata4 
Ercole Vellone5 Emanuela Tiozzo1 
Immacolata Dall’Oglio1*- 1Professional Development, Continuing Education and Research Service, Bambino Gesù Children’s Hospital, IRCCS, Rome, Italy
- 2Department of Paediatric Emergency, Bambino Gesù Children’s Hospital, IRCCS, Rome, Italy
- 3Pediatric Semi-Intensive Care Area/Unit, Bambino Gesù Children’s Hospital, IRCCS, Rome, Italy
- 4Rheumatology Unit, Bambino Gesù Children’s Hospital, IRCCS, Rome, Italy
- 5Department of Biomedicine and Prevention, University of Rome “Tor Vergata,” Rome, Italy
Children and young adults (CYAs) with chronic conditions need to engage in self-care to improve their quality of life. This study aimed to retrieve the literature on instruments to assess self-care in CYAs living with chronic conditions and evaluate the psychometric proprieties of the instruments retrieved. A systematic literature review was conducted on six databases to identify peer-reviewed papers that described or used an evaluation instrument of self-care in CYAs with chronic conditions. Twenty-three articles describing 11 instruments of self-care were identified. Five instruments (45.45%) were developed for specific diseases, while six (54.54%) for various chronic illnesses. Most of the instruments were focused on treatment adherence within self-care maintenance (i.e., behaviors to maintain illness stability), excluding the monitoring of clinical parameters or the management of exacerbations. This review provides an overview of available instruments that measure self-care in CYAs with chronic conditions, which health professionals could use for patient education.
Introduction
Chronic diseases are defined broadly as conditions that last for a year or longer and require ongoing medical attention or limit activities of daily living or both (1). 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 (7). In Europe, in 2016, 16% of the population aged between 16 and 29 had a long-standing health problem (8). In Italy, 91.8% of children aged 0–14 are in good health, 9.6% have one or more chronic conditions, 1.6% suffer from two or more chronic illnesses (9). In addition, children with complex conditions have to deal with multiple transitions across providers and care settings (10), and those requiring technology support and home care bear even higher costs (11–13). Furthermore, long-term chronic conditions have a strong impact on wellbeing and require ongoing management over a period of years or decades (14).
In the pediatric population, the most common pediatric chronic conditions, including those with medical complexity (15), are asthma, cystic fibrosis, type 1 diabetes mellitus, and chronic lung disease (16). In particular, children with the highest levels of medical complexity are estimated to be about 0.4–0.7% of all US children (17). Therefore, it is important to promote the quality of life of CYAs with chronic conditions and their family members. This requires a life-long process of self-care or self-management to preserve and improve 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 among scholars (20). Self-management refers to the process that individuals with a health problem intentionally use to gain control of their disease, in partnership with health professionals (21). Self-care is a more encompassing concept, referring to patients’ ability and performance 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 health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a healthcare provider” (24). According to Riegel and Dickson (25), self-care is a naturalist decision-making process based on patient experience (25).
In particular, the Middle-Range Theory of Self-Care of Chronic Illness identifies behaviors of self-care maintenance, characterized by those actions performed to maintain chronic condition stable (e.g., taking medications as prescribed); self-care monitoring, concerning all those behaviors performed to keep signs and symptoms under control (e.g., monitoring weight); and self-care management, concerning the reaction to symptoms when they occur (e.g., call the healthcare provider in case of fever) (26, 27). However, this Middle-Range Theory was developed for adults. In the pediatrics, especially for CYAs, few theoretical models have been described, such as the new comprehensive model of self-care in CYAs (28). This model emphasized that self-care is a very broad concept since it not only includes personal skills but also healthcare actions provided by others. Others include informal caregivers (parents, relatives, friends, volunteers) who play a crucial role in chronic patient care, but also 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 depression are interrelated (18). On the one hand, better self-care is associated with positive outcomes, such as more adequate disease control, greater patient safety, higher quality of life, and better personal development, which may lead to lower depression and distress (28, 30). On the other hand, psychological aspects can also be considered as influencing factors; for example, if CYAs are depressed, then they are more likely to neglect self-care behaviors (31, 32). Moreover, healthcare systems admit that self-care has a positive impact on reducing chronic diseases and on reducing health costs (33). Indeed, in general, chronic diseases requires a great amount of human and economic resources (34). Managing chronic diseases requires specialized professional competences and health 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 child’s age at the onset of chronic alteration (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 self-care such as the need for precisely scheduled daily medications, consumption of special dietary products, regular physical exercise, 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 ask for support from parents and other caregivers for most of their daily activities (37). Parents should encourage adolescents to develop self-esteem and avoid an excessively protective attitude (38). Adolescence is a key development period for establishing lifelong health-related behaviors (39). Furthermore, patients with complex chronic diseases, along with developmental changes in adolescence, face challenges related to their health-related quality of life (40).
There is evidence that self-care actions have 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-care (38, 42). The higher educational level of the population has generated a higher demand for specific information and education regarding healthcare topics (43). This demand has caused 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 self-care activities and address any deficiencies.
Therefore, the aims of this study were: (a) to retrieve and describe the literature on instruments (scales or questionnaires) that assess 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 addition, a manual search was carried out to broaden the search. The study selection was conducted in July 2021. The main keywords were “self-care,” “self-management,” “Scale,” “Questionnaire,” “Chronic Disease,” “Pediatric,” “Adolescent,” “Young Adult,” “Parents.” Boolean operators—NOT, 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 Material.
Eligibility Criteria
The review included all types of peer-reviewed papers with no limits of time or language. Eligible studies for inclusion had to meet the following criteria: (a) any study published on a peer-reviewed journal; (b) patients with chronic diseases or complex chronic diseases; (c) patients aged between 0 and 24 years; (d) studies that described or used a self-care evaluation scale; (e) studies describing self-care in children or young adults and/or the parental role; (f) studies in any language describing self-care evaluation instruments.
The exclusion criteria were: (a) papers that did not include instruments that evaluated self-care; (b) self-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 not peer-reviewed; (f) scales did not include at least one of the self-care dimensions (self-care maintenance, self-care monitoring, self-care management); (g) studies that evaluated only self-efficacy.
Study Selection
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 make the final decision.
Data Extraction and Synthesis
The following data were extracted: authors and year of publication; country where the study was conducted; aim; study design; population (patient and/or parents age); type of chronic diseases and if mental diseases were included; scales or questionnaires; administration method; timing of administration; whether the 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 scale; description of the scale or part of it; original author and year; authors who included the scale in their paper; whether the scale was original or adapted; language; whether the entire scale 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 way the scale 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 addition, two researchers independently investigated the dimension of self-care reported in each scale (self-care maintenance, self-care monitoring, and self-care management) according to the Middle-Range Theory of Self-Care of Chronic Illness (26).
Results
The study selection process is shown in Figure 1. The initial search identified 3,326 records across the six databases and six articles after a manual search. After removing the duplicates, 2,545 articles were reviewed by reading the title and abstract and 2,468 were excluded because they did not meet the inclusion criteria. The full texts of the remaining 77 articles were read and, of these, 23 papers were included in the final 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) flow diagram showing the study selection process.
Characteristics of the Included Studies
Most of the 23 studies included in this review were published in the last decade (n = 20; 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 Mexico (n = 1; 4.34%) (Table 1). Seven studies (30.43%) used a cross-sectional approach, two (8.69%) were pilots, one (4.34%) was a longitudinal observational study, one (4.34%) used a qualitative design, and 12 (52.17%) did not report their study design. The age of the study 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 one study (4.34%) only the parents.
Table 1. Characteristics of the articles included in the review.
Nine studies (39.13%) developed or used self-care instruments only for one type of chronic condition: spina bifida (n = 1; 4.76%) (46), type 1 diabetes (n = 3; 14.28%) (47–49), epilepsy (n = 2; 9.52%) (50, 51), asthma (n = 1; 4.76%) (52), cystic fibrosis (n = 1; 4.76%) (38), and congenital heart disease (n = 1; 4.76%) (40). Ten studies focused on multiple chronic conditions such as kidney disease, 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 13 studies (56.52%) considered neurodevelopmental and/or mental disorders (according to the DSM 5 classification) as an exclusion criterion; two studies (8.69%) included also patients with neurodevelopmental and/or mental disorders, eight studies (34.78%) did not specify whether these disorders were considered exclusion criteria.
Twenty-two of the studies included in this review reported the administration method of the instruments. The authors of four studies (18.2%) specified that the questions were asked by an assistant researcher. With regard to data collection, 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 seven studies (69.56%) did not specify this. Most of the selected papers included information about the validity and reliability of the instruments (n = 20; 86.9%), while in three papers this information was not provided because they were based on previous validation studies.
Characteristics of the Self-Care Instruments
Overall, 11 self-care instruments focusing on pediatric patients with chronic conditions were described in the studies included in this review (Table 2). Seven instruments were adapted, 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 process from pediatric to adult care (29, 55, 59–61, 65). Five (45.45%) instruments were published in English (38, 46, 52, 58, 59); one 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 instrument was both in English and Italian (9.09%) (62), and one is available in English and Malaysian (9.09%) (50). Five (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-care and thus were analyzed in every part. The remaining instruments (n = 6; 54.54%) were analyzed only for those dimensions that were relevant to the aim of this review.
Table 2. Characteristics of the self-care measurement tools retrieved from this review.
The self-care instruments were developed for patients (n = 4; 36.36%) (49, 56, 58, 65), for parents (n = 5; 45.45%) (38, 50, 52, 59, 62), or both (n = 2; 18.18%) (46, 65). The target population of the instruments were adolescents/young adults (n = 4; 36.36%) (29, 46, 49, 56, 58, 65), children/adolescents (n = 4; 36.36%) (29, 50, 58, 59), children (n = 1; 9.09%) (52). One instrument (9.09%) (62) did not describe the target population. Five instruments (45.45%) were developed 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) (50), Self-Management of Type 1 Diabetes in Adolescence (SMOD-A) (49), the Adolescent Self-Management and Independence Scale II (AMIS II) (46). The remainder (n = 6.54; 54%) were developed for non-specific chronic conditions (29, 56, 58, 59, 62, 65). Five of the 11 instruments were self-administered (45.45%) (38, 49, 50, 62, 65), three instruments were administered by others, such as the research assistant (27.27%) (29, 46, 52, 56, 59) and one (9.09%) 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-determination theory as reference model (56), the TRAQ scale used the Transtheoretical model (65), the Family Asthma Management System Scale (FAMMS) was developed according to the Family asthma management system model (52), and the ON Taking Responsibility for Adolescent/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 five instruments (46, 49, 56, 57, 65), following the COSMIN taxonomy (45). Construct validity was verified through Exploratory Factor Analysis (EFA) for six instruments (29, 49, 50, 57–59, 65), and through Confirmatory Factor Analysis (CFA) for two instruments (46, 57). Only for the Star-x 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 only 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 seven instruments (29, 38, 50, 54, 56–59, 65).
Table 3. Psychometric characteristics of the self-care 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 four instruments (29, 38, 46, 49), and inter-rater reliability was also verified for the SCIS e 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 non-differential validity were not reported for any instruments.
Self-Care Aspects of Each Instrument
In this review, the self-care aspects/areas reported in the 11 instruments were described according to Riegel’s self-care theory focusing on the aspects of each of the three self-care domains (self-care maintenance, self-care monitoring, self-care management) by Riegel (Table 4). As regards to self-care maintenance, all the 11 instruments included the aspect/area of medication adherence and only the (UNC) TR(x)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 Child (ASiT-PC) (56, 62, 65). The aspect of lifestyle was examined only in the TRAQ (65), whereas the prevention aspect was included in two instruments: FAMSS and ON TRAC (52, 58). The knowledge of health-care services was explored in two instruments, the Parent STARx Questionnaire (STARx-P) and TRAQ (59, 65).
Table 4. Self-care dimensions and aspects of each measurement tool.
With regard to self-care monitoring, the area of vital signs monitoring was explored only in the Adherence Schedule in Transplantation-Proxy Child (ASiT-PC) and in the Adolescent Self-Management 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-care management domain, only 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 II and STARx. These are also the instruments published more recently (46, 57).
Although all the identified instruments included at least one of Riegel’s self-care domains, only one instrument, the SMODA, investigated all of the three self-care domains: self-care maintenance, self-care monitoring, self-care management (49). Every instrument included in this review explored self-care maintenance, focusing particularly on medication and treatment adherence. The importance attributed to autonomy in medication administration might be associated to the advantage of reducing use of healthcare services (66). However, few instruments focused on monitoring vital signs and symptom management. Concerning self-care monitoring, only one instrument investigated signs and symptoms monitoring, an important aspect to detect important health status changes. As regards the self-care management area, the instruments explored mostly the consulting aspect, leaving very little space for the management of complications or acute exacerbations through spontaneous self-care strategies. Overall, the medical management of a chronic condition is not new, probably along with paternalistic and directive guidance in the relationship between healthcare providers and families (67), often associated with the passive decision-making of families allowing the provider to choose the course of action (68, 69). This aspect might reflect the persisting belief in the monopoly on health of the healthcare providers (70), and a great trust assigned to healthcare professionals of reference, such as the nurse case managers (71).
Studies showed that also self-care monitoring and self-care management is important. For example, Riegel et al. (27) describe how symptom monitoring affects self-care behaviors, underling the importance of symptom detection, interpretation and response as fundamental elements of the self-care process (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 knowledgeable about their disease management (59).
Specific instruments were developed for the most 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 II for spina bifida (38, 46, 49, 50, 52). The decision to have 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). However, even though having instruments for assessing self-care in CYAs with specific chronic diseases is fundamental, there 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 found to be more generic [i.e., (UNC) TR(x)ANSITION Scale and TRAQ)] designed for chronic diseases in general or young adults with special healthcare needs (56, 65). However, 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 (e.g., disease-specific knowledge, scheduling appointments) that young adults can begin, continue, and finish the transition process, including those skills influencing self-care (74–77). Therefore, self-care might be considered an integral part of transition readiness in the context of a challenging transfer to the adult health care system. To our knowledge, no instrument is currently available to assess self-care 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. According to Cohen et al. (15), these conditions in childhood are characterized by four domains: (a) family-identified healthcare service needs, (b) one or more chronic clinical conditions, 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 complexity of these diseases (78). Therefore, it would be useful to develop a specific self-care instrument for CYAs with complex chronic conditions.
Furthermore, the present review analyzed also the methods used to administer the instruments. Five instruments were self-reported since the respondents were in school-age or adolescents (38, 49, 50, 62, 65). Four instruments asked also the parents to fill in the questionnaire. This aspect might show how the family maintain a central and vital role in supporting both the children—during the pre and scholar age—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 four instruments, such as the self-determination 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 fundamental to obtain sounder and valid instruments (81). Recently, a self-care model has been developed for complex chronic conditions (28). This model includes the affecting factors, self-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 research purposes, as outcome measures for interventional studies, or as a basis for further validation studies. Moreover, we recommend the use of self-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 sound tools (78). Measuring a patient’s level of self-care using an assessment instrument represents, for the clinician, the first step to identifying educational gaps and factors hindering the engagement process (82). Healthcare providers play an important role in fostering autonomy using educational strategies that take into consideration developmental stages and family support (83–85). Educational interventions have resulted in improvements in health outcomes, knowledge related to the chronic condition, 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 responsibility for managing their health alone or with the help 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. However, these contexts were found to be very broad and the concept of self-care may overlap with other concepts such as healthcare transition from pediatric to adult clinical setting (56). Therefore, the instruments found could not be considered totally comparable.
Secondly, the search strategy of this review did not include gray 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 not included in this review. Although the authors of this review believe that these patients deserve specific considerations, important features of the self-care process may have been missed.
Another limitation was the voluntary exclusion of the studies that assessed self-efficacy. Indeed, the aim of this review was to identify the instruments that evaluate self-care behaviors (maintenance, monitoring, management) rather than assessing confidence in self-care (90). However, future quantitative studies could investigate the confidence aspect since the process of self−care implies that self−care confidence (in patients and caregivers) influences the entire process of self−care across the three dimensions of self−care maintenance, monitoring, and management (91).
Conclusion
This review analyzed 23 studies that described 11 self-care instruments for CYAs. Only one instrument assessed each aspect of self-care (maintenance, monitoring, and management) according to our definition. In particular, most of the instruments were focused on treatment adherence within self-care maintenance and ignored the aspects of prevention, feeding, and lifestyle. Less attention was given to vital signs and symptoms monitoring, and to responses to exacerbations of chronic conditions. Therefore, it would be useful to investigate how health professionals are focused on these self-care dimensions while providing education to patients and their families. Furthermore, future research may develop a comprehensive instrument measuring all the dimensions of self-care across all chronic conditions, also including those with medical complexity. Future instruments might be based on “The comprehensive model of self-care in CYA with chronic conditions” (28). This model could guide to a global evaluation of self-care in relation to developmental age, also considering the parent’s contribution and shift of agency.
Data Availability Statement
The original contributions presented in the study are included in the article/Supplementary Material, further inquiries can be directed to the corresponding author/s.
Author Contributions
GS, VB, and VK made 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 final version of the manuscript as submitted and agreed to be accountable for all the aspects of this study.
Funding
This study was co-funded by the Italian Ministry of Health and the Centre 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 do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
Acknowledgments
We 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 design of the research project. They all work at the Bambino Gesù Children’s Hospital, IRCCS. Moreover, we thank Gennaro Rocco, Scientific Director of the Centre of Excellence for Nursing Scholarship of Nursing Professional Order of Rome for co-funding this study.
Supplementary Material
The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fped.2022.832453/full#supplementary-material
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Keywords: self-care, self-management, instruments, chronic disease, pediatric, adolescent, young adult, parent
Citation: Biagioli V, Spitaletta G, Kania V, Mascolo R, Gawronski O, Liburdi A, Manzi G, Salata M, Vellone E, Tiozzo E and Dall’Oglio I (2022) Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review. Front. Pediatr. 10:832453. doi: 10.3389/fped.2022.832453
Received: 09 December 2021; Accepted: 28 February 2022;
Published: 28 March 2022.
Edited by:
Mitsue Maru, University of Hyogo, JapanReviewed by:
Aviva Michelle Goldberg, University of Manitoba, CanadaJane Sattoe, Rotterdam University of Applied Sciences, Netherlands
Copyright © 2022 Biagioli, Spitaletta, Kania, Mascolo, Gawronski, Liburdi, Manzi, Salata, Vellone, Tiozzo and Dall’Oglio. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
*Correspondence: Immacolata Dall’Oglio, immacolata.dalloglio@opbg.net
†These authors share first authorship