Back to Journals » ClinicoEconomics and Outcomes Research » Volume 16

Methods used to account for caregivers’ sex and gender within studies examining the financial burden of caregivers of children and adolescents : Results from a scoping review

Authors Guertin JR , Gilbert-Ouimet M, Dugas M, Carnovale V, Jalbert L, Svyntozelska O, Demers J , Matteau L, Bergeron F , LeBlanc A

Received 4 October 2023

Accepted for publication 11 January 2024

Published 26 January 2024 Volume 2024:16 Pages 35—53


Checked for plagiarism Yes

Review by Single anonymous peer review

Peer reviewer comments 3

Editor who approved publication: Dr Samer Hamidi

Jason Robert Guertin,1– 3 Mahée Gilbert-Ouimet,1,4 Michèle Dugas,5 Valérie Carnovale,5 Laura Jalbert,5 Olha Svyntozelska,2,5 Juliette Demers,5 Léonie Matteau,2,4 Frédéric Bergeron,6 Annie LeBlanc2,5

1Centre de recherche du Centre de recherche du CHU de Québec-Université Laval, Quebec City, Quebec, Canada; 2Faculty of Medicine, Université Laval, Quebec City, Quebec, Canada; 3Centre de recherche en organogénèse expérimentale de l’Université Laval/LOEX, Quebec City, Quebec, Canada; 4Department of Health Sciences, Université du Québec À Rimouski, Levis, Quebec, Canada; 5VITAM Research Center on Sustainable Health, Quebec Integrated University Health and Social Services Center, Quebec City, Quebec, Canada; 6Bibliothèque-Direction des services-conseils, Université Laval, Quebec City, Quebec, Canada

Correspondence: Jason Robert Guertin, Centre de recherche du CHU de Québec – Université Laval, Axe Santé des Populations et Pratiques Optimales en Santé, Hôpital du Saint-Sacrement, 1050 chemin Sainte-Foy, local J1-11, Quebec City, Québec, G1S 4L8, Canada, Tel +1 418-682-7511, ext 82516, Email [email protected]

Background: Interest in the financial burden of informal caregivers has been growing. Unfortunately, it remains unclear which method(s) should be used when quantifying this burden.
Purpose: We conducted a scoping review aimed at identifying which methods have been used to conduct such work and quantified their performance. We were also interested in examining how sex and gender considerations were considered within selected studies.
Data Sources: Using a standardized approach, we identified studies published between 2012 and 2022 that aimed to document the financial burden of caregivers to child and adolescent patients. Our search strategy was applied to the MEDLINE, Embase, CINHAL, and Academic Search Premier databases.
Study Selection: Manuscript selection was performed by pairs of reviewers.
Data Extraction: Data extraction was performed by one reviewer with a second reviewer performing quality control. Results were reported using a narrative approach.
Data Synthesis: We identified 9801 unique citations, of which 200 were included in our review. Selected studies covered various disease area (eg, infection/parasitic diseases [n = 31, 16%]) and included quantitative (n = 180, 90%), qualitative (n = 4, 2%) and mixed study designs (n = 16, 8%). Most studies (n = 182, 91%) used questionnaires/surveys, either alone or in combination with other methods, to assess caregivers’ financial burden. Less than half (n = 93, 47%) of studies reported on caregivers’ sex and none reported on their gender.
Conclusion: We conducted an unrestricted review of published studies examining caregiver’s financial burden which allowed us to identify general methodological trends observed in this literature. We believe this work may help improve future studies focusing on this important issue.

Keywords: scoping review, caregivers, financial burden, sex and gender considerations, methods


Chronic diseases affect 22–25% of children aged 0–18 years in North America.1,2 These diseases generally require a combination of care involving healthcare settings and families.3,4 Although caring for children is a routine role for parents, when a child suffers from a chronic disease, this role tends to be complexified and can generate a burden.5 This burden, experienced by unpaid individuals caring for a patient and/or a relative (hereby referred to as “informal caregivers”), has received growing interest over recent years.6–10 The informal caregivers’ burden refers to the level of multifaceted strain, responsibilities and limitations perceived by the informal caregivers, originating from conflicts between care needs and other duties of the caregiver.11,12 It has been associated with deteriorations of the emotional and physical health, social life, and financial status.13

There is interest from health economists and experts in health technology assessment to quantify the value of the informal caregiver’s economic burden.14–18 Depending on the patients and their condition, informal caregivers have been known to incur both direct (eg, spending for medical equipment and drugs) and indirect costs (eg, conducting unpaid household chores, taking unpaid leave of absence from work to attend a patient’s clinical appointment, seeking professional help such as psychologists to help coping with emotional strain, or even retiring early from work) due to their involvement with patients.5–8,11,19–24 For example, in the United States of America, an additional US$1377.60–US$9059.49 annually were spent by informal caregivers on medical expenses for children aged 0–18 years with chronic diseases such as asthma, diabetes, or epilepsy compared to children without these conditions.25

Much of the work that has been conducted in the area of informal caregivers’ economic burden has focused on quantifying the amount directly and indirectly spent by caregivers of patients suffering from specific diseases, including Alzheimer’s disease,26–28 oncology,29–31 and rare diseases.32–34 These studies indicated that the caregiver’s relationship with the patient influences the level of economic burden imposed.35 This is especially the case for individuals caring for underaged patients (eg, parents and guardians of children and adolescent patients), as these patients may be unable to provide financially for themselves, therefore shifting expenses to their caregivers. Furthermore, in situations where the child suffers from a chronic condition, it is not uncommon for the caregiver’s employment status to change, with some caregivers completely abandoning their employment to care for their child.24 Also, caregivers of children with health problems are themselves at increased risk of developing health problems, leading to additional expenses.19,21,23,36–40 These caregivers were for instance shown to have higher risks of chronic health problems, activity limitations, and depressive symptoms compared with caregivers of healthy children.20

The financial burden of caregiving for a child is further complexified by the fact that sex and gender are major determinants of the caregiving experience.20,35,41,42 The concept of sex, referring to a set of biological attributes assigned at birth, is often interchangeably used with the concept of gender, which refers to sociocultural characteristics evolving in time.42 Indeed, not only are females more likely than males (sex) to be informal caregivers, gendered characteristics traditionally ascribed with femininity have also been shown to increase the burden.43–45 For instance, while typically feminine personality traits such as being nurturing can influence the nature of care provided to the child (eg, being fully present, validating feelings, providing physical affection), feminine roles such as being the primary caregiver of a household can increase the amount of care provided24,41,42,45 and consequently lower working hours.46,47 In addition, females caregivers report higher levels stress, anxiety, fatigue, low self-esteem, and optimism compared with males caregivers, further increasing their burden.46–49 As such, any assessment of the economic burden of caregivers should account for sex (biological) and gender (sociocultural) considerations.

Methods to estimate this burden, especially regarding gendered roles, are lacking. Thus, our study aimed to identify and describe approaches and measures used to document the financial burden of informal caregivers. Specifically, the objectives of this study are to 1) identify approaches (eg, interviews, surveys) and measures (eg, validated questionnaires) that document one or more aspects of the financial burden of informal caregivers; 2) describe the performance (eg, response rate, aspects covered) of these approaches and measures; and 3) document to which extent considerations of sex and gender are addressed within these approaches and measures.

Materials and Methods

Study Design

We conducted a scoping review in accordance with the Joanna Briggs Institute Manual for Evidence Synthesis50 and followed the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) for its reporting (the PRIMA-ScR checklist is provided within Appendix 1).51

Search Strategy and Eligibility Criteria

We report our eligibility criteria using the PCC criteria (participants, concept, context) framework. Participants: We included parents or legal guardians who provided care and support for dependents without direct remuneration (hereafter, caregivers). Concept: Economic burden of caregivers such as direct (eg, value of expenditure) and indirect costs (eg, value of labour, productivity losses) required to deal with a specific situation. In addition, the methods by which information on the economic burden was documented, which included both qualitative (eg, interviews) and quantitative (eg, questionnaires) approaches. Context: We chose a worldwide context, ie, no limits regarding countries or language. Our searches focused on published literature to identify and describe approaches and measures used in primary studies to document the economic burden of caregivers. Thus, commentaries, protocols, abstracts, theses, books, and grey literature were excluded. Our review protocol was registered on the Zenodo platform on March 31st, 2022.

An experienced information specialist developed the MEDLINE (Ovid), Embase, CINHAL (EBSCO), and Academic Search Premier (EBSCO) search strategies in consultation with the review team. We limited results to papers published between 2012 and 2022 in peer reviewed journals. Another information specialist peer reviewed the strategy according to the PRESS checklist.52 All searches were conducted on March 24th, 2022 (Appendix 2). Deduping was performed in the EndNote software (Clarivate Analytics, LLC) using the Bramer method.53

Data Selection and Extraction

We developed standardized forms for study selection and data extraction and conducted pilot exercises with all reviewers. Study selection was performed by pairs of independent reviewers while extraction was performed by one reviewer, with a second reviewer performing quality control for all data extraction forms. We resolved discrepancies by discussion or by consulting with a senior reviewer. Extracted data included: 1) study characteristics (eg, country, study design, approaches used to measure economic burden of caregivers, sample size, response rate); 2) direct and indirect costs (eg, direct medical and non-medical costs, indirect costs such as absenteeism); and 3) sex and self-reported gender identity (eg, presence of variables and extent of use). We used the DistillerSR software to manage this review (DistillerSR. V.2.35. Evidence Partners; 2021).

Data Synthesis

We report data using a narrative approach which includes tables and graphs demonstrating the study characteristics, direct costs (medical and non-medical) and indirect costs. Our data synthesis is focused on providing a descriptive summary of the approaches used to measure the economic burden of caregivers in addition to sex/gender dimensions in the included studies on this subject.


Literature Search

Our search strategies yielded a total of 9801 titles and abstracts following deduplication (Figure 1). We excluded 9275 references after the screening of titles and abstract. A total of 526 references were assessed for eligibility based on their full text. Ultimately, 200 articles were included in our review.33,54–251,255

Figure 1 PRISMA flow-chart.

Notes: PRISMA figure adapted fromTricco AC, Lillie E, Zarin W, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): checklist and Explanation. Ann Intern Med. 2018;169(7):467–473. Creative Commons.51

Characteristics of Included Studies

Table 1 provides a description of the studies included in our scoping review. The included studies were from a wide variety of countries, which we grouped into continents to simplify data synthesis. Studies were from North America (n = 55, 27.5%), Asia (n = 49, 24.5%), Europe (n = 41, 20.5%), Africa (n = 34, 17.0%), South America (n = 8, 4.0%), Oceania (n = 9, 4.5%) or multiple continents (n = 4, 2.0%). Most studies had a quantitative design (n = 180, 90.0%), followed by mixed methods (n = 16, 8.0%), and qualitative designs (n = 4, 2.0%).

Table 1 Characteristics of Studies Included in the Scoping Review

Children and adolescents supported by caregivers suffered from a wide spectrum of conditions or diseases. The top five most prevalent conditions were infections/parasitic diseases (n = 31, 15.5%), congenital diseases (n = 23, 11.5%), gastrointestinal issues (n = 21, 10.5%), respiratory issues (n = 21, 10.5%), and diseases of the nervous system (n = 20, 10.0%). In addition, 24 included studies (12.0%) examined caregivers of children and adolescents who were not restricted to a single condition or disease.

Sample sizes of participants analyzed within the included studies varied greatly, ranging from 11 families to 79,109 caregivers. However, exact numbers of caregivers invited within the included studies is largely unknown as only 66 studies (33.0%) reported on the number of invited participants. Of note, reported response rates ranged from 16% to 100% with a median response rate of 65%.

Economic Burden of Caregivers: Approaches and Measures

Studies used various approaches and measures to quantify and evaluate the economic burden of caregivers (Table 2). Several studies used only one approach to measure the economic burden of caregivers (n = 113, 56.5%), others used a combination of two approaches (n = 75, 37.5%), and a few used three approaches or more (n = 12, 6.0%). The three most common approaches were questionnaires/surveys (n = 182, 91.0%), interviews (n = 57, 28.5%), and medical/billing/insurance records or databases (n = 52, 26.0%). In most studies, authors developed their own questionnaires (n = 139, 69.5%), used validated scales (n = 46, 23.0%), and/or used survey data from elsewhere (n = 34, 17.0%). Another less commonly used approach was that of a cost diary (n = 8, 4.0%). Some commonly used survey data included the National Survey of Children with Special Health Care Needs (n = 13, 6.5%) and the Medical Expenditure Panel Survey (n = 7, 3.5%). Various validated scales were cited by the studies. The most used validated scales included the Work Productivity and Activity Impairment scale (n = 10, 21.7%),252 the Client Service Receipt Inventory (n = 3, 6.5%),253 and the Caregiver Impact Questionnaire (n = 3, 6.5%).254

Table 2 Approaches and Measures Used to Assess Caregivers’ Economic Burden

Direct Medical, Direct Non-Medical and Indirect Costs

The included studies measured various types of costs in a non-mutually exclusive manner (Table 3). More specifically, 153 studies (76.5%) measured at least some direct medical cost, 148 studies (74.0%) measured at least some direct non-medical cost, and 179 studies (89.5%) measured some indirect cost. Most studies (n = 159, 79.5%) measured cost items from more than one category and 121 studies (60.5%) measured all three types of costs. Alternatively, 10 studies (5.0%) only measured direct medical costs, three studies (1.5%) only measured direct non-medical costs and 28 studies (14.0%) only measured indirect costs. The most frequently examined cost items were those related to transportation (direct non-medical costs; n = 123, 61.5%), medication (direct medical costs; n = 117, 58.5%), and absenteeism (indirect costs; n = 115, 57.5%).

Table 3 List of Cost Items Considered Within the Included Studiesa

Sex and Gender Variables

Of the 200 included studies, less than half (n = 93, 46.5%) reported on the sex of the caregivers and none reported on their gender (Table 4). Twenty-seven (13.5%) of the included studies reported having explored how respondents’ sex impacted the results of their studies. However, confounding adjustment or stratification on this characteristic was only reported in 13 of these.

Table 4 Reporting of Caregivers’ Sex and Gender and Their Use Within Included Studies

Alternatively, of those that reported on the respondents’ sex, only 24 (12.0%) adjusted for this characteristic within their analyses; the majority (n = 19, 9.5%) of which did so by stratifying their results in function of respondents’ sex. Although sex-stratified analyses were not the focus of any of these studies, two main trends were observed. First, sex-stratified analyses were used to report how total costs differed (or did not) in function of respondents’ sex; differences or lack of were not generally discussed within the studies that examined these relations.104,109,111,115,139,204,207,210 Second, stratification on the respondents’ sex was used to account for and/or illustrate sex-based differences in indirect costs incurred by caregivers.139,204,207,220,221


Economic burden of caregivers is of particular interest for many actors, but questions remain regarding the best approaches to assess this burden. As such, we conducted a scoping review of the recent literature to examine how this burden was assessed within different groups of caregivers of child and adolescent patients. We selected 200 studies of various designs and conducted within a wide spectrum of diseases and geographical settings.33,54–251,255

Overall, this review highlighted that cost items examined, and approaches used to assess caregivers’ economic burden related to these items varied substantially, as some were more inclusive concerning gendered expenses. This finding was expected as it reflects the fact that the caregivers’ economic burden and the items that cause this burden will vary in function of the nature and severity of the disease or condition the patient suffers from. Nonetheless, our review still identified several interesting trends which warrant further discussion.

Researchers tend to favor combining multiple approaches and tools when assessing caregivers’ economic burden (Table 2). For example, researchers favor the use of questionnaires and surveys (n = 182, 91.0%), yet almost half of these (n = 78, 39.0%) used at least a second approach within their same study. Likewise, even if researchers clearly favored developing their own questionnaires (n = 139, 76.4%), one in four (n = 38, 19.0%) still combined these with other tools. Unfortunately, it is unclear if combining approaches and/or tools within a single study resulted in more precise or complete responses regarding this burden than selecting a single approach and/or tool.

Selected studies differed substantially in terms of cost items assessed regarding caregivers’ economic burden (Table 3). Despite these differences, our results clearly identify that researchers conducting such studies do so to assess, albeit not exclusively, respondents’ indirect costs related to caring for a child or an adolescent. We believe that this result reflects the fact that children and adolescents suffering from various diseases and conditions are likely to need external help from caregivers, therefore requiring them to dedicate paid or unpaid time to the patient. Adequately quantifying the value of the time dedicated to patients will likely require interacting with caregivers. This finding may be due to the fact that many of the studies selected focused on clinical settings where the respondent was caring for a child or an adolescent suffering from a chronic and potentially severe condition (Table 1). As previously observed by others,24 caregivers of such patients are not only likely to have trouble maintaining fulltime employment, the amount of time required caring for these patients will also likely be greater.

Lastly, although informal caregiving has been recognized as a sex and gender-related concept,24,35,41–43 most studies did not report on these considerations and those that did so tended to ignore these within their analyses and results (Table 4).

Faced with these different trends, we have identified a number of observations that may help researchers in the planning of such studies in the future. First, as previously noted, time dedicated to caring for children and adolescents suffering from various conditions and illness are frequently reported by caregivers to be related to their economic burden. Although the amount of time required to care for patients, the type of time (eg, paid work time, unpaid time) and their related cost are expected to vary in function of multiple factors, researchers should at least consider examining these within their own work. Those that did not report these cost items should explain why these were not required or examined.

Second, researchers should describe both respondents in their studies and those who were invited to participate but refused. Indeed, although the median response rate within selected study was 65%, only 66 studies (33.0%) reported this measure. Such a result raises a question regarding the validity of studies that fail to report this measure. Furthermore, seeing as included studies generally aimed to assess the monetary value of caregivers’ financial burden, this issue raises the risk that estimates provided within these studies could be biased.

Third, although not exclusively, most studies included in our review used questionnaires and surveys to assess respondents’ economic burden and investigators did so by designing their own cost questionnaires. This result likely reflects the fact that the financial impact imposed on caregivers and which cost item will be impacted could vary significantly in relation to clinical manifestation related to the patients’ condition or illness, cultural consideration and geographical settings. Nonetheless, researchers planning to assess this burden should examine the option to use previously validated scales and questionnaires (eg,252–254,256); either exclusively or to supplement them with additional targeted questions of importance to the clinical team.

Finally, sex- and gender-related characteristics have been widely omitted and/or not considered within selected studies, even though they have been shown to be related to the caregivers’ burden.20,35,41,42 Considering sex and gender with appropriate tools, following the Sex And Gender Equity in Research (SAGER) guidelines,257 is highly recommended. Also, as income inequity remains between females and males, it is important to account for this issue when estimated costs related to caregivers’ productivity losses. Future work could account for this issue by applying a single unit cost (eg, mean hourly wage within the sample) to the time spent providing informal caregiving.

Beyond these observations, we must recognize that our review focused solely on the financial impacts of caregiving which are but a fraction of economic considerations that could be considered within economic evaluations. Some groups have argued that broader economic aspect related to caregiver burden, such as caregivers’ spillover effects (eg, the amount of quality-adjusted life-years they have lost or gained due to caregiving), could be examined within such studies for further inclusion within subsequent health economic evaluations. Although economic evaluations combining both patient-incurred benefits (or decrements) and caregiver-incurred benefits (or decrements) can be found within the scientific literature (eg,15,17), these remain rare. While we believe that there is merit to consider caregiver spillover effects within future economic evaluation, doing so will require substantial research to adequately define how to do so. Additional research focussing on this topic is needed.


Our study has limitations that we must recognize. Firstly, we designed a de novo search strategy (Appendix 1) to examine caregiver economic burden within multiple literature databases. Unfortunately, caregivers and their burden remain ill-defined concepts within the scientific literature. Though we recognize that the search strategy that we proposed may be imperfect, it was designed in collaboration with a research librarian who coauthors this manuscript. Furthermore, the search strategy was independently reviewed by a second research librarian. Secondly, we categorized cost items in terms of “direct medical costs”, “direct non-medical costs” and “indirect costs”. While some authors have argued against using this categorization,258 we still grouped identified cost items within these three categories as they remain widely used within the scientific literature. Thirdly, some of the selected studies differentiated their respondents as “male” or “female” (eg, 19 [9.5%] studies presented sex stratified results). As sex and gender tend to be intertwined, sex is frequently considered a proxy of gender. However, gender identity goes beyond such a binary definition, as it is a spectrum.257 Also, gender is multifaceted. It comprises a person’s gender identity, as well as gender roles (eg, responsibility for child care), gender relationships (eg, how individuals act or are treated based on their gender), and “institutionalized gender” (eg, the way power and resources are distributed based on gender and can be reflected by education level, personal income).259 Therefore, sex dichotomization only partly captures gender. We encourage researchers to measure both sex and gender. We also strongly encourage researchers against using the terms sex and gender interchangeably, as this common mistake can generate confusion and even lead to incorrect interpretations and recommendations.44,259 Lastly, unlike others,18 we did not quantify this burden within our review and instead focused on the methods used by others to quantify this burden. Nonetheless and in addition to our observations, we provide readers with our raw structured datasets (refer to Supplementary Tables 14 in Appendix 3) to aid them in identifying past studies in a wide range of clinical areas and geographical locations as well as to help plan future studies aimed at assessing this burden within caregivers of child and adolescent patients.


Our review identified 200 studies examining the financial burden of familial caregivers of children and adolescents. Our results highlight the wide spectrum of methods and approaches used to assess this burden but that many fail to clearly provide key data needed to evaluate the methodological quality of their work (eg, study response rates). Similarly, our results also highlighted that sex and gender-based considerations are often omitted from such studies even though caregiving is strongly related to gendered roles. Such omissions can raise concerns regarding the internal and external validity of study results. Researchers conducting such work in the future must better acknowledge methodological components of their work, including sex and gender-based considerations, to strengthen their results.


We would like to thank Marie-Eve Berthiaume from University Laval for peer-reviewing the MEDLINE search strategy.

Author Contributions

All authors have contributed significantly to 1) the conception, design, execution of the study, the acquisition of data, analysis and interpretation of the data, or in all of these areas; 2) have drafted or written, or substantially revised or critically reviewed the manuscript; 3) have agreed on the journal to which the article was submitted; 4) reviewed and agreed on all previous versions of the manuscript; and 5) agree to take responsibility and be accountable for the contents of the manuscript.


The work presented in this manuscript was funded by the Quebec Cell, Tissue and Gene Therapy Network - ThéCell (a thematic network supported by the Fonds de recherche du Québec-Santé). JRG is the recipient of a Chercheur-boursier Junior 2 career award from the Fonds de recherche du Québec-Santé (Award #330678). MGO currently holds a Tier 2 Canada Research Chair in Sex and Gender in Occupational Health. AL currently holds a Tier 1 Canada Research Chair in Knowledge Mobilization and Integration in Practice. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.


Ms. Michèle Dugas reports grants from Canadian Institutes of Health Research (CIHR), during the conduct of the study. The Authors declare that there is no conflict of interest.

The work presented in this manuscript was conducted at the CHU de Québec-Université Laval Research centre and the VITAM Research Center on Sustainable Health, both located in Quebec City (Canada). It has not been previously presented within any scientific meetings.


1. Queenan JA, Wong ST, Barber D, Morkem R, Salman A. The Prevalence of Common Chronic Conditions seen in Canadian Primary Care: Results from the Canadian Primary Care Sentinel Surveillance Network. Canadian Primary Care Sentinel Surveillance Network; 2021.

2. Van Cleave J, Gortmaker SL, Perrin JM. Dynamics of obesity and chronic health conditions among children and youth. JAMA. 2010;303(7):623–630.

3. Roberts AA. The labor market consequences of family illness. J Ment Health Policy Econ. 1999;2(4):183–195.

4. Sharpe L, Butow P, Smith C, McConnell D, Clarke S. The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their carers. Psychooncology. 2005;14(2):102–114.

5. Piran P, Khademi Z, Tayari N, Mansouri N. Caregiving burden of children with chronic diseases. Electron Physician. 2017;9(9):5380–5387.

6. Abedi H, Abbaszadeh A, Kazemi M. Silent Screams: experiences of Caregiver Suffering by Parents of Children with Thalassemia: a Qualitative Study. Journal of Qualitative Research in Health Sciences. 2020;3(3):281–291.

7. Jafarmanesh H, Ranjbaran M, Vakilian K, Rezaei K, Zand S, Tajik R. Survey of levels of anxiety and depression in parents of children with chronic illness. Iranian Journal of Psychiatric Nursin. 2014;1:45–53.

8. Oskouie F. Quality of Life in Parent of Children with Leukemia and its Related Factors. Iran J Nurs. 2013;26:1–10.

9. Kobos E, Imiela J. Factors affecting the level of burden of caregivers of children with type 1 diabetes. Appl Nurs Res. 2015;28(2):142–149.

10. Raina P, O’Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115(6):e626–636.

11. Canning RD, Harris ES, Kelleher KJ. Factors predicting distress among caregivers to children with chronic medical conditions. J Pediatr Psychol. 1996;21(5):735–749.

12. Liu Z, Heffernan C, Tan J. Caregiver burden: a concept analysis. Int J Nurs Sci. 2020;7(4):438–445.

13. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649–655.

14. Hunt CK. Concepts in caregiver research. J Nurs Scholarsh. 2003;35(1):27–32.

15. Goodrich K, Kaambwa B, Al-Janabi H. The inclusion of informal care in applied economic evaluation: a review. Value Health. 2012;15(6):975–981.

16. Krol M, Papenburg J, van Exel J. Does including informal care in economic evaluations matter? A systematic review of inclusion and impact of informal care in cost-effectiveness studies. Pharmacoeconomics. 2015;33(2):123–135.

17. Lavelle TA, D’Cruz BN, Mohit B, et al. Family Spillover Effects in Pediatric Cost-Utility Analyses. Appl Health Econ Health Pol. 2019;17(2):163–174.

18. Mattingly TJ, Diaz FV, Seo D, Melgar CAI. A review of caregiver costs included in cost-of-illness studies. Expert Rev Pharmacoecon Outcomes Res. 2022;22(7):1051–1060.

19. Brehaut JC, Garner RE, Miller AR, et al. Changes over time in the health of caregivers of children with health problems: growth-curve findings from a 10-year Canadian population-based study. Am J Public Health. 2011;101(12):2308–2316.

20. Brehaut JC, Kohen DE, Garner RE, et al. Health among caregivers of children with health problems: findings from a Canadian population-based study. Am J Public Health. 2009;99(7):1254–1262.

21. Brehaut JC, Kohen DE, Raina P, et al. The Health of Primary Caregivers of Children With Cerebral Palsy: how Does It Compare With That of Other Canadian Caregivers? Pediatrics. 2004;114(2):e182–e191.

22. Breslau N, Staruch KS, Mortimer EA. Psychological distress in mothers of disabled children. Am J Dis Child. 1982;136(8):682–686.

23. Burton P, Phipps S. Economic Costs of Caring for Children with Disabilities in Canada. Canadian Public Policy / Analyse de Politiques. 2009;35(3):269–290.

24. Dogba MJ, Bedos C, Durigova M, et al. The impact of severe osteogenesis imperfecta on the lives of young patients and their parents - A qualitative analysis. BMC Pediatr. 2013;13:153.

25. Miller GF, Coffield E, Leroy Z, Wallin R. Prevalence and Costs of Five Chronic Conditions in Children. J Sch Nurs. 2016;32(5):357–364.

26. Lin PJ, D’Cruz B, Leech AA, et al. Family and Caregiver Spillover Effects in Cost-Utility Analyses of Alzheimer’s Disease Interventions. Pharmacoeconomics. 2019;37(4):597–608.

27. Olazarán J, Agüera-Ortiz L, Argimón JM, et al. Costs and quality of life in community-dwelling patients with Alzheimer’s disease in Spain: results from the GERAS II observational study. International Psychogeriatrics. 2017;29(12):2081–2093.

28. Wimo A, Winblad B, Stoffler A, Wirth Y, Mobius HJ. Resource utilisation and cost analysis of memantine in patients with moderate to severe Alzheimer’s disease. Pharmacoeconomics. 2003;21(5):327–340.

29. Longo CJ, Fitch M, Deber RB, Williams AP. Financial and family burden associated with cancer treatment in Ontario, Canada. Support Care Cancer. 2006;14(11):1077–1085.

30. Van Houtven CH, Ramsey SD, Hornbrook MC, Atienza AA, van Ryn M. Economic burden for informal caregivers of lung and colorectal cancer patients. Oncologist. 2010;15(8):883–893.

31. Luengo-Fernandez R, Leal J, Gray A, Sullivan R. Economic burden of cancer across the European Union: a population-based cost analysis. Lancet Oncol. 2013;14(12):1165–1174.

32. Schreiber-Katz O, Klug C, Thiele S, et al. Comparative cost of illness analysis and assessment of health care burden of Duchenne and Becker muscular dystrophies in Germany. Orphanet J Rare Dis. 2014;9:210.

33. Cavazza M, Kodra Y, Armeni P, et al. Social/economic costs and health-related quality of life in patients with Duchenne muscular dystrophy in Europe. Eur J Health Econ. 2016;17 Suppl 1:19–29.

34. Yang G, Cintina I, Pariser A, Oehrlein E, Sullivan J, Kennedy A. The national economic burden of rare disease in the United States in 2019. Orphanet J Rare Dis. 2022;17(1):163.

35. Cardinali P, Migliorini L, Rania N. The Caregiving Experiences of Fathers and Mothers of Children With Rare Diseases in Italy: challenges and Social Support Perceptions. Front Psychol. 2019;10:1780.

36. Beckman PJ. Influence of selected child characteristics on stress in families of handicapped infants. Am J Ment Defic. 1983;88(2):150–156.

37. Dyson L, Edgar E, Crnic K. Psychological predictors of adjustment by siblings of developmentally disabled children. Am J Ment Retard. 1989;94(3):292–302.

38. Frey KS, Greenberg MT, Fewell RR. Stress and coping among parents of handicapped children: a multidimensional approach. Am J Ment Retard. 1989;94(3):240–249.

39. Gowen JW, Johnson-Martin N, Goldman BD, Appelbaum M. Feelings of depression and parenting competence of mothers of handicapped and nonhandicapped infants: a longitudinal study. Am J Ment Retard. 1989;94(3):259–271.

40. McKinney B, Peterson RA. Predictors of stress in parents of developmentally disabled children. J Pediatr Psychol. 1987;12(1):133–150.

41. Chu SY, Wen CC, Weng CY. Gender Differences in Caring for Children with Genetic or Rare Diseases: a Mixed-Methods Study. Children. 2022;9(5):56.

42. Sharma N, Chakrabarti S, Grover S. Gender differences in caregiving among family - caregivers of people with mental illnesses. World J Psychiatry. 2016;6(1):7–17.

43. Swinkels J, Tilburg TV, Verbakel E, Broese van Groenou M. Explaining the Gender Gap in the Caregiving Burden of Partner Caregivers. J Gerontol B Psychol Sci Soc Sci. 2019;74(2):309–317.

44. Krieger N. Genders, sexes, and health: what are the connections--and why does it matter? Int J Epidemiol. 2003;32(4):652–657.

45. Hasson-Ohayon I, Goldzweig G, Sela-Oren T, Pizem N, Bar-Sela G, Wolf I. Attachment style, social support and finding meaning among spouses of colorectal cancer patients: gender differences. Palliative Supportive Care. 2015;13(3):527–535.

46. Wadhwa D, Burman D, Swami N, Rodin G, Lo C, Zimmermann C. Quality of life and mental health in caregivers of outpatients with advanced cancer. Psychooncology. 2013;22(2):403–410.

47. Schrank B, Ebert-Vogel A, Amering M, et al. Gender differences in caregiver burden and its determinants in family members of terminally ill cancer patients. Psychooncology. 2016;25(7):808–814.

48. Statistics Canada. More than half of women provide care to children and care-dependent adults in Canada, 2022; 2022. Available from: Accessed January 12, 2023.

49. Burns CM, LeBlanc TW, Abernethy A, Currow D. Young caregivers in the end-of-life setting: a population-based profile of an emerging group. J Palliat Med. 2010;13(10):1225–1235.

50. Peters MD, Godfrey C, McInerney P, Munn Z, Tricco AC, Khalil H. Chapter 11: scoping Reviews. In: Aromatis MZ, editor JBI Manual for Evidence Synthesis. 2020.

51. Tricco AC, Lillie E, Zarin W, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): checklist and Explanation. Ann Intern Med. 2018;169(7):467–473.

52. McGowan J, Sampson M, Salzwedel DM, Cogo E, Foerster V, Lefebvre C. PRESS Peer Review of Electronic Search Strategies: 2015 Guideline Statement. J Clin Epidemiol. 2016;75:40–46.

53. Bramer WM, Giustini D, de Jonge GB, Holland L, Bekhuis T. De-duplication of database search results for systematic reviews in EndNote. J Med Libr Assoc. 2016;104(3):240–243.

54. Amoakoh HB, Aikins M. Household cost of out-patient treatment of Buruli ulcer in Ghana: a case study of Obom in Ga South Municipality. BMC Health Serv Res. 2013;13:507.

55. Abdullat M, Hayajneh W, Banni Issa A, et al. Use of health care resources for varicella in the paediatric population, Jordan. East Mediterr Health J. 2021;27(2):159–166.

56. Abuosi AA, Adzei FA, Anarfi J, Badasu DM, Atobrah D, Yawson A. Investigating parents/caregivers financial burden of care for children with non-communicable diseases in Ghana. BMC Pediatr. 2015;15:185.

57. Adamu AL, Karia B, Bello MM, et al. The cost of illness for childhood clinical pneumonia and invasive pneumococcal disease in Nigeria. BMJ glob. 2022;7(1):01.

58. Adegoke SA, Abioye-Kuteyi EA, Orji EO. The rate and cost of hospitalisation in children with sickle cell anaemia and its implications in a developing economy. Afr Health Sci. 2014;14(2):475–480.

59. Adjagba A, Onwujekwe O, Bocoum F, Osei-Akoto I, Matovu F. Economic cost of malaria in four countries in sub-Saharan Africa: a comparative analysis. African Journal of Health Economics. 2019;8(1):23–33.

60. Aerts C, Leahy S, Mucasse H, et al. Quantifying the Acute Care Costs of Neonatal Bacterial Sepsis and Meningitis in Mozambique and South Africa. Clin Infect Dis. 2022;74:S64–S69.

61. Ahmad A. Socio-Economic Challenges of Afghan Parents of Children with Cancer: the Children’s Hospital Lahore Pakistan Experience. Pediatr Blood Cancer. 2021;68(SUPPL 5):567.

62. Ahmed S, Dorin F, Satter SM, et al. The economic burden of rotavirus hospitalization among children < 5 years of age in selected hospitals in Bangladesh. Vaccine. 2021;39(48):7082–7090.

63. Ahuja S, Lederman S, Bagai P, Tsimicalis A, Martiniuk A, Arora R. A pilot study to determine the out-of-pocket expenditures by families of children being treated for cancer at public hospitals in India. Pediatr Blood Cancer. 2014;61:S159.

64. Al-Farsi Y, Waly M, Al-Sharbati M, et al. Variation in Socio-Economic Burden for Caring of Children with Autism Spectrum Disorder in Oman: caregiver Perspectives. J Autism Dev Disord. 2013;43(5):1214–1221.

65. Aliabadi N, Bonkoungou IJO, Pindyck T, et al. Cost of pediatric hospitalizations in Burkina Faso: a cross-sectional study of children aged <5 years enrolled through an acute gastroenteritis surveillance program. Vaccine. 2020;38(42):6517–6523.

66. Aljunid SM, Al Bashir L, Ismail AB, Aizuddin AN, Rashid SAZA, Nur AM. Economic impact of switching from partially combined vaccine “Pentaxim® and hepatitis B” to fully combined vaccine “Hexaxim®” in the Malaysian National Immunization Program. BMC Health Serv Res. 2022;22(1):1–12.

67. Angelis A, Kanavos P, Lopez-Bastida J, et al. Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe. Eur J Health Econ. 2016;17 Suppl 1:31–42.

68. Anjum MU, Nadeem K, Durrani AU, Riaz H. Economic burden of childhood pneumonia in Abbottabad, Pakistan. Med Forum Mon. 2017;28(5):55–58.

69. Apte A, Shrivastava R, Sanghavi S, et al. Multicentric Hospital-Based Surveillance of Pertussis Amongst Infants Admitted in Tertiary Care Facilities in India. Indian Pediatr. 2021;58(8):709–717.

70. Arora S, Goodall S, Viney R, Einfeld S. Societal cost of childhood intellectual disability in Australia. J Intellect Disabil Res. 2020;64(7):524–537.

71. At Thobari J, Mulyadi AWE, Watts E, et al. Direct and indirect costs of acute diarrhea in children under five years of age in Indonesia: health facilities and community survey. Lancet Reg Health West Pac. 2022;19:100333.

72. Atehortúa S, Flórez ID, Ceballos M, Granados C, Orozco LE, Mejía A. Cost-effectiveness analysis of ondansetron for the treatment of vomiting in children under 5 years of age with gastroenteritis in Colombia. Value in Health Regional Issues. 2015;8:1–7.

73. Aung L, Saw SM, Chan MY, Khaing T, Quah TC, Verkooijen HM. The hidden impact of childhood cancer on the family: a multi-institutional study from Singapore. Ann Acad Med Singapore. 2012;41(4):170–175.

74. Badaru UM, Abdulrahman H, Ahmad RY, Lawal IU, Zakari MK. Analysis of Direct Monthly Cost of Outpatient Hospital-Based Care for Children With Cerebral Palsy in Kano, Nigeria. Value in Health Regional Issues. 2019;19:145–150.

75. Baddour K, Mady LJ, Schwarzbach HL, et al. Exploring caregiver burden and financial toxicity in caregivers of tracheostomy-dependent children. Int J Pediatr Otorhinolaryngol. 2021;145:110713.

76. Bant DD, Kapfo TU. The burden, social and economic consequences of childhood pneumonia in north Karnataka-A cross-sectional study. Indian J Public Health Res Dev. 2020;11(9):19–23.

77. Barron DA, Molosankwe I, Romeo R, Hassiotis A. Urban adolescents with intellectual disability and challenging behaviour: costs and characteristics during transition to adult services. Health Soc Care Community. 2013;21(3):283–292.

78. Bello A, Sangweni B, Mudi A, Khumalo T, Moonsamy G, Levy C. The Financial Cost Incurred by Families of Children on Long-Term Dialysis. Perit Dial Int. 2018;38(1):14–17.

79. Benevides TW, Lee J, Nwosu NAO, Franks J. Understanding the Family Impact of Autism Spectrum Disorder in a Racially and Ethnically Diverse Sample: findings from the National Survey of Children with Special Health Care Needs. Maternal Child Health J. 2019;23(7):951–960.

80. Bhaumik U, Norris K, Charron G, et al. A Cost Analysis for a Community-Based Case Management Intervention Program for Pediatric Asthma. J Asthma. 2013;50(3):310–317.

81. Bhuiyan MU, Luby SP, Alamgir NI, et al. Costs of hospitalization with respiratory syncytial virus illness among children aged <5 years and the financial impact on households in Bangladesh, 2010. J Global Health. 2017;7(1):193–201.

82. Bian C, Peng F, Guo H, Chen K. Investigation on Quality of Life and Economic Burden of Children with Cerebral Palsy in Changzhou. J Healthc Eng. 2022;2022:1519689.

83. Biddell CB, Kasow KA, Killela MK, et al. Understanding the financial and psychological impact of employment disruption among caregivers of pediatric HSCT recipients: a mixed methods analysis. Support Care Cancer. 2022;07:07.

84. Bilaver LA, Kester K, Smith B, Gupta R. Socioeconomic disparities in the economic impact of childhood food allergy. J Allergy Clin Immunol. 2016;137(2).

85. Burke RM, Rebolledo PA, Embrey SR, et al. The burden of pediatric diarrhea: a cross-sectional study of incurred costs and perceptions of cost among Bolivian families. BMC Public Health. 2013;13:708.

86. Burke RM, Smith ER, Dahl RM, et al. The economic burden of pediatric gastroenteritis to Bolivian families: a cross-sectional study of correlates of catastrophic cost and overall cost burden. BMC Public Health. 2014;14(1):1535–1561.

87. Burnett E, Rahajamanana VL, Raboba JL, et al. Diarrhea hospitalization costs among children <5 years old in Madagascar. Vaccine. 2020;38(47):7440–7444.

88. Caicedo C. Families with special needs children: family health, functioning, and care burden. J Am Psychiatr Nurses Assoc. 2014;20(6):398–407.

89. Carrello J, Lung T, Killedar A, Baur LA, Hayes A. Relationship between obesity and school absenteeism in Australian children: implications for carer productivity. Obes Res Clin Pract. 2021;15(6):587–592.

90. Cavazza M, Kodra Y, Armeni P, et al. Social/economic costs and quality of life in patients with haemophilia in Europe. Eur J Health Econ. 2016;17:53–65.

91. Chambers GM, Settumba SN, Carey KA, et al. Prenusinersen economic and health-related quality of life burden of spinal muscular atrophy. Neurology. 2020;95(1):e1–e10.

92. Chatterji P, Decker SL, Markowitz S. The effects of mandated health insurance benefits for autism on out-of-pocket costs and access to treatment. J Policy Anal Manage. 2015;34(2):328–353.

93. Cheng BT, Silverberg JI. Association of pediatric atopic dermatitis and psoriasis with school absenteeism and parental work absenteeism: a cross-sectional United States population-based study. J Am Acad Dermatol. 2021;85(4):885–892.

94. Cherian RA, P P, Panda BK. Direct medical costs in management of preterm neonates with respiratory distress syndrome in an Indian tertiary care teaching hospital. J Pharm Health Serv Res. 2017;8(4):275–279.

95. Chevreul K, Berg Brigham K, Brunn M, Es Portes V. Fragile X syndrome: economic burden and health-related quality of life of patients and caregivers in France. J Intellect Disabil Res. 2015;59(12):1108–1120.

96. Chevreul K, Berg Brigham K, Clément M. Economic burden and health-related quality of life associated with Prader-Willi syndrome in France. J Intellect Disabil Res. 2016;60(9):879–890.

97. Chevreul K, Gandré C, Brigham K, et al. Social/economic costs and health-related quality of life in patients with fragile X syndrome in Europe. Eur J Health Econ. 2016;17:43–52.

98. Chevreul K, Michel M, Brigham K, et al. Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe. Eur J Health Econ. 2016;17:7–18.

99. Chiluba BC, Moyo G. Caring for a cerebral palsy child: a caregivers perspective at the University Teaching Hospital, Zambia. BMC Res Notes. 2017;10(1):724.

100. Clark M, Cummings B, Kuhlthau K, Frassica N, Noviski N. Nonmedical out-of-pocket expenses, work absenteeism, and productivity for families with a child admitted to the pediatric intensive care unit. Chest. 2015;148(4):56.

101. Clark ME, Cummings BM, Kuhlthau K, Frassica N, Noviski N. Impact of Pediatric Intensive Care Unit Admission on Family Financial Status and Productivity: a Pilot Study. J Intensive Care Med. 2019;34(11–12):973–977.

102. Coronell-Rodriguez W, Arteta acosta C, Alvis-Guzman N, Alvis-Zakzuk NJ. Costs of the acute otitis media in pediatrics, in a City of the Colombian Caribbean coast. Value Health. 2017;20(5).

103. Crabtree-Ide C, Lillvis DF, Nie J, et al. Evaluating the Financial Sustainability of the School-Based Telemedicine Asthma Management Program. Popul Health Manag. 2021;24(6):664–674.

104. Crawford B, Hashim SS, Prepageran N, et al. Impact of Pediatric Acute Otitis Media on Child and Parental Quality of Life and Associated Productivity Loss in Malaysia: a Prospective Observational Study. Drugs - Real World Outcomes. 2017;4(1):21–31.

105. Crettenden A, Wright A, Skinner N. Mothers caring for children and young people with developmental disabilities: intent to work, patterns of participation in paid employment and the experience of workplace flexibility. Community, Work & Family. 2014;17(3):244–267.

106. Cutter S, Molter D, Dunn S, et al. Impact of mild to severe hemophilia on education and work by US adult men and women and caregivers of children with hemophilia B: the bridging hemophilia B experiences results and opportunities into solutions (B-HERO-S) study. Haemophilia. 2016;22:38–39.

107. Darwish MM, Hassan SH, Taha SF, El-Megeed HS A, Ismail TAM. Family impact and economic burden among caregivers of children with chronic kidney disease in Assiut, Egypt. J Egypt Public Health Assoc. 2020;95(1):27.

108. Dawson CP, Aryeetey GC, Agyemang SA, Mensah K, Addo R, Nonvignon J. Costs, burden and quality of life associated with informal caregiving for children with Lymphoma attending a tertiary hospital in Ghana. International Journal of Care Coordination. 2020;23(4):165–172.

109. De Broucker G, Ssebagereka A, Apolot RR, et al. The economic burden of measles in children under five in Uganda. Vaccine: X. 2020;6:100077.

110. Dennett KV, Tracy S, Fisher S, et al. Treatment of perforated appendicitis in children: what is the cost? J Pediatr Surg. 2012;47(6):1177–1184.

111. DeRigne L, Porterfield SL. Employment Change Among Married Parents of Children With Special Health Care Needs. J Family Issues. 2017;38(5):579–606.

112. Dovgan KN, Mazurek MO. Differential Effects of Child Difficulties on Family Burdens across Diagnostic Groups. J Child Family Stud. 2018;27(3):872–884.

113. Dragojlovic N, van Karnebeek CDM, Ghani A, et al. The cost trajectory of the diagnostic care pathway for children with suspected genetic disorders. Genet Med. 2020;22(2):292–300.

114. Duru CO, Okpokowuruk FS, Adesina AD, et al. Caring for Children with Congenital Heart Diseases:Economic Burden of Pre-Surgical Management on Nigerian Families. West Afr J Med. 2021;38(2):144–151.

115. De Broucker G, Ahmed S, Hasan MZ, et al. The economic burden of measles in children under five in Bangladesh. BMC Health Serv Res. 2020;20(1):1026.

116. Ebrahim AJ, Naik F, Teni FS. Costs incurred by caregivers of under-five inpatients with community-acquired pneumonia at a university hospital in south-western Ethiopia. S. 2019;34(1):109.

117. Edwards CH, Bekkevold T, Flem E. Lost workdays and healthcare use before and after hospital visits due to rotavirus and other gastroenteritis among young children in Norway. Vaccine. 2017;35(28):3528–3533.

118. Eijgelshoven I, Demirdas S, Smith TA, van Loon JMT, Latour S, Bosch AM. The time consuming nature of phenylketonuria: a cross-sectional study investigating time burden and costs of phenylketonuria in the Netherlands. Mol Genet Metab. 2013;109(3):237–242.

119. Ekirapa-Kiracho E, De Broucker G, Ssebagereka A, et al. The economic burden of pneumonia in children under five in Uganda. Vaccine: X. 2021;8:100095.

120. Feenstra DJ, Hutsebaut J, Laurenssen EM, Verheul R, Busschbach JJ, Soeteman DI. The burden of disease among adolescents with personality pathology: quality of life and costs. J Personal Disord. 2012;26(4):593–604.

121. Fenny AP, Otieku E, Labi -KA-K, Asante FA, Enemark U. Costs and Extra Length of Stay because of Neonatal Bloodstream Infection at a Teaching Hospital in Ghana. PharmacoEconomics. 2020:1–10.

122. Flores D, Ribate MP, Montolio M, Ramos FJ, Gomez M, Garcia CB. Quantifying the economic impact of caregiving for Duchenne muscular dystrophy (DMD) in Spain. Eur J Health Econ. 2020;21(7):1015–1023.

123. Fluchel MN, Kirchhoff AC, Bodson J, et al. Geography and the burden of care in pediatric cancers. Pediatr Blood Cancer. 2014;61(11):1918–1924.

124. Foster CC, Chorniy A, Soyang K, Kan K, Heard-Garris N, Davis MM. Children With Special Health Care Needs and Forgone Family Employment. Pediatrics. 2021;148(3):1–11.

125. Garnett A, Browne G. The Relationship Between Traumatic Injury in Children and Long-Term Use of Health and Social Services by Children and Their Families. J Trauma Nurs. 2016;23(4):215–226.

126. Gasana J, Gibson-Young L, Ibrahimou B, et al. Asthma in schoolchildren in Monroe county, Florida: school-based needs assessment. J Asthma. 2016;53(3):330–338.

127. Gaw J, Crowley S, Monagle P, Jones S, Newall F. The economic costs of routine INR monitoring in infants and children. J Thromb Haemost. 2013;11:91.

128. Genereaux D, van Karnebeek CD, Birch PH. Costs of caring for children with an intellectual developmental disorder. Disabil Health J. 2015;8(4):646–651.

129. Ghandour RM, Hirai AH, Blumberg SJ, Strickland BB, Kogan MD. Financial and nonfinancial burden among families of CSHCN: changes between 2001 and 2009-2010. Acad Pediatr. 2014;14(1):92–100.

130. Ghatak N, Trehan A, Bansal D. Financial burden of therapy in families with a child with acute lymphoblastic leukemia: report from north India. Support Care Cancer. 2016;24(1):103–108.

131. Goldhagen J, Fafard M, Komatz K, Eason T, Livingood WC. Community-based pediatric palliative care for health related quality of life, hospital utilization and costs lessons learned from a pilot study. BMC Palliat Care. 2016;15:1–12.

132. Gomez C, Barrena J, Garcia-Paz V, et al. Impact of house dust mite-driven asthma on children’s school performance and activity. Eur J Pediatr. 2021;21:21.

133. Graves JM, Moore M, Kehoe L, et al. Family Hardship Following Youth Concussion: beyond the Medical Bills. J Pediatr Nurs. 2020;51:15–20.

134. Grau J, Zollner JP, Schubert-Bast S, et al. Direct and indirect costs and cost-driving factors of Tuberous sclerosis complex in children, adolescents, and caregivers: a multicenter cohort study. Orphanet J Rare Dis. 2021;16(1):282.

135. Gupta R, Holdford D, Bilaver L, Dyer A, Holl JL, Meltzer D. The economic impact of childhood food allergy in the United States. JAMA Pediatr. 2013;167(11):1026–1031.

136. Handa S, Jain N, Narang T. Cost of care of atopic dermatitis in India. Contact Dermatitis. 2014;70:100.

137. Hannan N, McMillan SS, Tiralongo E, Steel A. Treatment Burden for Pediatric Eosinophilic Esophagitis: a Cross-Sectional Survey of Carers. J Pediatr Psychol. 2021;46(1):100–111.

138. Hasan H, Syed Mohamed A, Mn A. The Costs of Caregivers for Children with Disabilities that Participate in Centre-Based and Home-Based Community-Based Rehabilitation (CBR) Programmes in the East Coast of Malaysia. Intellectual Discourse. 2019;27:945–963.

139. Hasan MZ, Mehdi GG, De Broucker G, et al. The economic burden of diarrhea in children under 5 years in Bangladesh. Int J Infect Dis. 2021;107:37–46.

140. Hatzmann J, Peek N, Heymans H, Maurice-Stam H, Grootenhuis M. Consequences of caring for a child with a chronic disease: employment and leisure time of parents. J Child Health Care. 2014;18(4):346–357.

141. Heidemann CH, Lauridsen HH, Kjeldsen AD, Faber CE, Johansen EC, Godballe C. Caregiver Quality of Life and Daily Functioning in Relation to Ventilating Tube Treatment. Otolaryngol - Head Neck Surgery. 2014;151(2):341–347.

142. Hennessee I, Chinkhumba J, Briggs-Hagen M, et al. Household costs among patients hospitalized with malaria: evidence from a national survey in Malawi, 2012. Malar J. 2017;16(1):395.

143. Hussain SA, Ortendahl JD, Bentley TGK, et al. The economic burden of caregiving in epilepsy: an estimate based on a survey of US caregivers. Epilepsia. 2020;61(2):319–329.

144. Ismail A, Sk Abd Razak R, Suddin LS, Mahmud A, Kamaralzaman S, Yusri G. The Economic Burden and Determinant Factors of Parents/Caregivers of Children with Cerebral Palsy in Malaysia: a Mixed Methods Study. Int J Environ Res. 2022;19(1):01.

145. Kalski M, Schubert-Bast S, Kieslich M, et al. Clinical characteristics, resource utilization, quality of life and care situation for patients with Dravet syndrome in Germany. Zeitschrift fur Epileptologie. 2019;32(4):326–338.

146. Katana PV, Abubakar A, Nyongesa MK, et al. Economic burden and mental health of primary caregivers of perinatally HIV infected adolescents from Kilifi, Kenya. BMC Public Health. 2020;20(1):504.

147. Khatun M, Datta D, Hazra A, Ghosh P, Selim MB, Mondal R. Economic Burden of Juvenile Idiopathic Arthritis in India. Indian Pediatr. 2021;58(1):38–40.

148. King-Stephens D, Wheless J, Krogh C, et al. Burden of disease in patients with a history of status epilepticus and their caregivers. Epilepsy Behav. 2020;112:107374.

149. Kittikraisak W, Suntarattiwong P, Kanjanapattanakul W, et al. Comparison of incidence and cost of influenza between healthy and high-risk children <60 months old in Thailand, 2011-2015. PLoS One. 2018;13(5):1–15.

150. Kobayashi M, Abdul-Karim A, Milucky JL, et al. Estimating the economic burden of pneumococcal meningitis and pneumonia in northern Ghana in the African meningitis belt post-PCV13 introduction. Vaccine. 2021;39(33):4685–4699.

151. Kodhiambo MO, Oyugi JO, Amugune BK. Modelling the household cost of paediatric malaria treatment in a rural county in Kenya: do non-user fee payments matter? A partial cost of illness analysis. BMJ open. 2020;10(3):e033192.

152. Kodra Y, Cavazza M, Santis M, et al. Social Economic Costs, Health-Related Quality of Life and Disability in Patients with Cri Du Chat Syndrome. Int J Environ Res. 2020;17(16):17.

153. Kodra Y, Cavazza M, Schieppati A, et al. The social burden and quality of life of patients with haemophilia in Italy. Blood Transfusion. 2014;12(Suppl 3):s567–575.

154. Krah NM, Bardsley T, Nelson R, et al. Economic Burden of Home Antimicrobial Therapy: OPAT Versus Oral Therapy. Hosp. 2019;9(4):234–240.

155. Krepiakevich A, Khowaja AR, Kabajaasi O, et al. Out of pocket costs and time/productivity losses for pediatric sepsis in Uganda: a mixed-methods study. BMC Health Serv Res. 2021;21(1):1252.

156. Kuhlmann A, Schmidt T, Treskova M, et al. Social/economic costs and health-related quality of life in patients with juvenile idiopathic arthritis in Europe. Eur J Health Econ. 2016;17 Suppl 1:79–87.

157. Labisa P, Andreozzi V, Mota M, et al. Cost of Illness in Patients with Duchenne Muscular Dystrophy in Portugal: the COIDUCH Study. PharmacoEconomics. 2021:1–8.

158. Lagae L, Irwin J, Gibson E, Battersby A. Caregiver impact and health service use in high and low severity Dravet syndrome: a multinational cohort study. Seizure. 2019;65:72–79.

159. Laizane G, Kivite A, Stars I, Cikovska M, Grope I, Gardovska D. Health-related quality of life of the parents of children hospitalized due to acute rotavirus infection: a cross-sectional study in Latvia. BMC Pediatr. 2018;18(1):114.

160. Landfeldt E, Lindgren P, Bell CF, et al. The burden of Duchenne muscular dystrophy: an international, cross-sectional study. Neurology. 2014;83(6):529–36.

161. Lavelle TA, Weinstein MC, Newhouse JP, Munir K, Kuhlthau KA, Prosser LA. Economic burden of childhood autism spectrum disorders. Pediatrics. 2014;133(3):e520–529.

162. Le ND, Phung NH, Vo TQ. Economic outcomes of dengue fever in hospitalized cases in Vietnam: a cross-sectional study. Value Health. 2017;20(5).

163. Linhares AC, Macias-Parra M, Sáez-Llorens X, et al. Rotavirus gastroenteritis in Latin America: a hospital-based study in children under 3 years of age. Trials Vaccinol. 2012;1:36–41.

164. Lopez-Bastida J, Linertova R, Oliva-Moreno J, et al. Social/economic costs and health-related quality of life in patients with Prader-Willi syndrome in Europe. Eur J Health Econ. 2016;17 Suppl 1:99–108.

165. Lopez-Bastida J, Lopez-Siguero JP, Oliva-Moreno J, et al. Social economic costs of type 1 diabetes mellitus in pediatric patients in Spain: CHRYSTAL observational study. Diabet Res Clin Pract. 2017;127:59–69.

166. López-Bastida J, Peña-Longobardo L, Aranda-Reneo I, et al. Social/economic costs and health-related quality of life in patients with spinal muscular atrophy (SMA) in Spain. Orphanet J Rare Diseases. 2017;12:1–7.

167. MacDonald A, Smith TA, Silva S, Alam V, van Loon JM. The personal burden for caregivers of children with phenylketonuria: a cross-sectional study investigating time burden and costs in the UK. Mol Genet Metab Rep. 2016;9:1–5.

168. Machuki JA, Aduda DSO, Omondi A, Onono MA. Patient-level cost of home- and facility-based child pneumonia treatment in Suba Sub County, Kenya. PLoS One. 2019;14(11):1–10.

169. MacKinnon N, St-Louis E, Yousef Y, Poenaru D, Situma M. Out-of-Pocket and Catastrophic Expenses Incurred by Seeking Pediatric and Adult Surgical Care at a Public, Tertiary Care Centre in Uganda. World J Surg. 2018;42(11):3520–3527.

170. Mandic CG, Johaningsmeir S, Corden TE, Earle A, Acevedo-Garcia D, Gordon JB. Impact of caring for children with medical complexity on parents’ employment and time. Community, Work & Family. 2017;20(4):444–458.

171. Marques G. The family of the child with cancer: socioeconomic needs. Rev Gaucha Enferm. 2017;38(4):e2016–2078.

172. McClung N, Glidewell J, Farr SL. Financial burdens and mental health needs in families of children with congenital heart disease. Congenit Heart Dis. 2018;13(4):554–562.

173. Medway M, Tong A, Craig JC, et al. Parental perspectives on the financial impact of caring for a child with chronic kidney disease. Nephrology. 2014;19:64.

174. Mejia N, Pallas SW, Saha S, et al. Typhoid and Paratyphoid Cost of Illness in Bangladesh: patient and Health Facility Costs From the Surveillance for Enteric Fever in Asia Project II. Clin Infect Dis. 2020;71(Suppl 3):548.

175. Menon MP, Njau JD, McFarland DA. Uganda Malaria Indicator Survey Technical Working G. Cost and Predictors of Care-Seeking Behaviors Among Caregivers of Febrile Children-Uganda, 2009. Am J Trop Med Hyg. 2016;94(4):932–937.

176. Mlcoch T, Puda R, Jesina P, Lhotakova M, Sterbova S, Dolezal T. Dietary patterns, cost and compliance with low-protein diet of phenylketonuria and other inherited metabolic diseases. Eur J Clin Nutr. 2018;72(1):87–92.

177. Mujuru HA, Burnett E, Nathoo KJ, et al. Cost estimates of diarrhea hospitalizations among children <5 years old in Zimbabwe. Vaccine. 2020;38(43):6735–6740.

178. Mustafa G, Al Aidaroos AY, Al Abaidani IS, et al. Incidence and economic burden of acute otitis media in children aged up to 5 years in three Middle Eastern countries and Pakistan: a multinational, retrospective, observational study. Journal of Epidemiology and Global Health. 2017;7(2):123–130.

179. Nanyonjo A, Bagorogoza B, Kasteng F, et al. Estimating the cost of referral and willingness to pay for referral to higher-level health facilities: a case series study from an integrated community case management programme in Uganda. BMC Health Serv Res. 2015;15(1):347.

180. Neri L, Lucidi V, Catastini P, Colombo C. Caregiver burden and vocational participation among parents of adolescents with CF. Pediatr Pulmonol. 2016;51(3):243–252.

181. Nes RB, Hauge LJ, Kornstad T, et al. Maternal Work Absence: a Longitudinal Study of Language Impairment and Behavior Problems in Preschool Children. J Marriage Fam. 2015;77(5):1282–1298.

182. Ngabo F, Mvundura M, Gazley L, et al. The Economic Burden Attributable to a Child’s Inpatient Admission for Diarrheal Disease in Rwanda. PLoS One. 2016;11(2):e0149805.

183. Nhi TNY, Trung VQ. The economic value of informal care for dengue patients in Vietnam. IntJ Res Ayurveda Pharmacy. 2016;7(6):101–106.

184. Nhu Hue BT, Riewpaiboon A, Pham LD, Thu Nguyen TT, Chaikledkaew U, Quang Vo T. Economic Burden of Hand, Foot, and Mouth Disease in Vietnam; an Evidence for Priority Setting and Efficiency Management. Pharm Sci Asia. 2020;48(1):73–78.

185. Niyibitegeka F, Riewpaiboon A, Youngkong S, Thavorncharoensap M. Economic burden of childhood diarrhea in Burundi. Glob Health Res Policy. 2021;6(1):13.

186. Nonoyama M, Katz S, Amin R, et al. Healthcare utilization and costs of pediatric home mechanical ventilation in Canada. Eur Respir J. 2019;54.

187. O’Brien MA, Rojas-Farreras S, Lee H-C, et al. Family impact of Rotavirus Gastroenteritis in Taiwan and Vietnam: an Ethnographic Study. BMC Infect Dis. 2015;15(1):1–9.

188. Olsson M, Bajpai R, Wee LWY, et al. The cost of childhood atopic dermatitis in a multi-ethnic Asian population: a cost-of-illness study. Br J Dermatol. 2020;182(5):1245–1252.

189. Olsson M, Bajpai R, Yew YW, et al. Associations between health‐related quality of life and health care costs among children with atopic dermatitis and their caregivers: a cross‐sectional study. Pediatr Dermatol. 2020;37(2):284–293.

190. Ortega-Sanchez IR, Molinari N-AM, Fairbrother G, et al. Indirect, out-of-pocket and medical costs from influenza-related illness in young children. Vaccine. 2012;30(28):4175–4181.

191. Ouyang L, Grosse SD, Riley C, et al. A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability. Res Dev Disabil. 2014;35(7):1518–1527.

192. Parish SL, Rose RA, Dababnah S, Yoo J, Cassiman SA. State-level income inequality and family burden of U.S. families raising children with special health care needs. Soc sci med. 2012;74(3):399–407.

193. Pena-Longobardo LM, Aranda-Reneo I, Oliva-Moreno J, et al. The Economic Impact and Health-Related Quality of Life of Spinal Muscular Atrophy. An Analysis across Europe. Int J Environ Res. 2020;17(16):05.

194. Péntek M, Gulácsi L, Brodszky V, et al. Social/economic costs and health-related quality of life of mucopolysaccharidosis patients and their caregivers in Europe. Eur J Health Econ. 2016;17:89–98.

195. Pijnacker R, Mangen MJ, van den Bunt G, Franz E, van Pelt W, Mughini-Gras L. Incidence and economic burden of community-acquired gastroenteritis in the Netherlands: does having children in the household make a difference? PLoS One. 2019;14(5):e0217347.

196. Pinto M, Madureira A, Barros LBP, et al. Complex care, high cost, and loss of income: frequent issues for families of children and adolescents with rare health conditions. Cad Saude Publica. 2019;35(9):e00180218.

197. Pinto M, Moreira MEL, Barros LBP, Costa A, Fernandes S, Kuper H. Catastrophic expenditure on congenital Zika syndrome: results of a cross-sectional study of caregivers of children in Rio de Janeiro, Brazil. Cad Saude Publica. 2021;37(11):e00007021.

198. Qi X, Xu J, Shan L, et al. Economic burden and health related quality of life of ultra-rare Gaucher disease in China. Orphanet J Rare Diseases. 2021;16(1):358.

199. Quinn BJ, Mancinelli ADO, Rooney-Otero K, et al. Scalp Staples Placed in a Pediatric Emergency Department: feasibility and Benefits of Home Removal. Pediatr Emerg Care. 2022;38(3):e1143–e1146.

200. Quintero J, Ramos-Quiroga JA, Sebastian JS, et al. Health care and societal costs of the management of children and adolescents with attention-deficit/hyperactivity disorder in Spain: a descriptive analysis. BMC Psychiatry. 2018;18(1):40.

201. Razzaque Sarker A, Islam Z, Ansary Khan I, et al. Cost of illness for cholera in a high risk urban area in Bangladesh: an analysis from household perspective. BMC Infect Dis. 2013;13(1):1–13.

202. Reich SM, Dahlin M, Tulagan N, et al. Caregivers’ Experiences During the COVID-19 Pandemic and Their Children’s Behavior. J Family Issues. 2021;1.

203. Ren Y, Li X. Direct and indirect costs of families with a child with acute lymphoblastic leukaemia in an academic hospital in China: a cross-sectional survey. BMJ open. 2019;9(7):e030511.

204. Riechmann J, Strzelczyk A, Reese JP, et al. Costs of epilepsy and cost-driving factors in children, adolescents, and their caregivers in Germany. Epilepsia. 2015;56(9):1388–1397.

205. Riewpaiboon A, Shin S, Thi Phuong Mai L, et al. Cost of rotavirus diarrhea for programmatic evaluation of vaccination in Vietnam. BMC Public Health. 2016;16(1):1–7.

206. Rochanathimoke O, Riewpaiboon A, Tharmaphornpilas P, Jiamsiri S, Thavorncharoensap M, Postma MJ. Economic burden of rotavirus diarrhea in Thailand: report from a pilot study on rotavirus vaccination. Vaccine. 2019;37(4):587–594.

207. Roddy A, O’Neill C. The economic costs and its predictors for childhood autism spectrum disorders in Ireland: how is the burden distributed? Autism. 2019;23(5):1106–1118.

208. Romaire MA, Bell JF, Grossman DC. Medical home access and health care use and expenditures among children with special health care needs. Arch Pediatr Adolesc Med. 2012;166(4):323–330.

209. Romley JA, Shah AK, Chung PJ, Elliott MN, Vestal KD, Schuster MA. Family-Provided Health Care for Children With Special Health Care Needs. Pediatrics. 2017;139(1):01.

210. Salcedo-Mejia F, Alvis-Zakzuk NJ, Carrasquilla-Sotomayor M, et al. Economic Cost of Severe Acute Respiratory Infection Associated to Influenza in Colombian Children: a Single Setting Analysis. Value in Health Regional Issues. 2019;20:159–163.

211. Saunders BS, Tilford JM, Fussell JJ, Schulz EG, Casey PH, Kuo DZ. Financial and employment impact of intellectual disability on families of children with autism. Fam Syst Health. 2015;33(1):36–45.

212. Schwartz CE, Stark RB, Audhya IF, Gooch KL. Characterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation. J Patient Rep Outcomes. 2021;5(1):124.

213. Seear M, Kapur A, Wensley D, Morrison K, Behroozi A. The quality of life of home-ventilated children and their primary caregivers plus the associated social and economic burdens: a prospective study. Arch Dis Child. 2016;101(7):620–627.

214. Shillcutt SD, LeFevre AE, Fischer Walker CL, Taneja S, Black RE, Mazumder S. Economic costs to caregivers of diarrhoea treatment among children below 5 in rural Gujarat India: findings from an external evaluation of the DAZT programme. Health Policy Plan. 2016;31(10):1411–1422.

215. Shillcutt SD, LeFevre AE, Fischer-Walker CL, Taneja S, Black RE, Mazumder S. Cost-effectiveness analysis of the diarrhea alleviation through zinc and oral rehydration therapy (DAZT) program in rural Gujarat India: an application of the net-benefit regression framework. Cost Eff Resour Allocation. 2017;15(1):58.

216. Siregar AYM, Pitriyan P, Walters D. The annual cost of not breastfeeding in Indonesia: the economic burden of treating diarrhea and respiratory disease among children (< 24mo) due to not breastfeeding according to recommendation. Int Breastfeed J. 2018;13:10.

217. Sonali Fernando E, Headley TY, Tissera H, Wilder-Smith A, De Silva A, Tozan Y. Household and Hospitalization Costs of Pediatric Dengue Illness in Colombo, Sri Lanka. Am J Trop Med Hyg. 2021;105(1):110–116.

218. Srinivasan M, Sindhu KN, Nag A, et al. Hospitalization Rates and Direct Medical Costs for Fever in a Pediatric Cohort in South India. J Infect Dis. 2021;224(Supple 5).

219. Sritipsukho P, Matchimmadamrong K, Chinratanapisit S, Deerojanawong J. Economic Burden of Hospitalization with Acute Wheezing in Preschool Children: a Multi-Center Study. J Med Assoc Thai. 2016;99 Suppl 4:S239–S245.

220. Strzelczyk A, Kalski M, Bast T, et al. Burden-of-illness and cost-driving factors in Dravet syndrome patients and carers: a prospective, multicenter study from Germany. Eur J Paediatr Neurol. 2019;23(3):392–403.

221. Strzelczyk A, Schubert-Bast S, Bast T, et al. A multicenter, matched case-control analysis comparing burden-of-illness in Dravet syndrome to refractory epilepsy and seizure remission in patients and caregivers in Germany. Epilepsia. 2019;60(8):1697–1710.

222. Sullivan P, Ghushchyan VG, Navaratnam P, et al. School absence and productivity outcomes associated with childhood asthma in the USA. J Asthma. 2018;55(2):161–168.

223. Sultana M, Alam NH, Ali N, et al. Household economic burden of childhood severe pneumonia in Bangladesh: a cost-of-illness study. Arch Dis Child. 2021;106(6):539–546.

224. Sunny AK, Gurung R, Gurung A, Basnet O, Kc A. Out of Pocket Expenditure for Sick Newborn Care in Referral Hospitals of Nepal. Maternal Child Health J. 2020;24(Suppl 1):e54.

225. Suthoff E, Rosenfeld M, Mainz JG, et al. Caregiver burden due to pulmonary exacerbations in CF: a survey of caregivers of children with cf in the US, UK, Ireland, and Germany. Pediatr Pulmonol. 2017;52:309–310.

226. Tankersley M, Winders T, Aagren M, et al. Subcutaneous immunotherapy takes more than the time in the clinic. Curr Med Res Opin. 2021;37(11):1925–1931.

227. Teoh LJ, Geelhoed EA, Bayley K, Leonard H, Laing NG. Health care utilization and costs for children and adults with Duchenne muscular dystrophy. Muscle Nerve. 2016;53(6):877–884.

228. Thorrington D, Balasegaram S, Cleary P, Hay C, Eames K. Social and Economic Impacts of School Influenza Outbreaks in England: survey of Caregivers. J Sch Health. 2017;87(3):209–216.

229. Toulany A, Matthew W, Katzman DK, et al. Cost analysis of inpatient treatment of anorexia nervosa in adolescents: hospital and caregiver perspectives. CMAJ Open. 2015;3(2):E192–E197.

230. Ughasoro MD, Akpeh JO, Echendu N, et al. Direct and Indirect Costs of Non-surgical Treatment for Acute Tonsillitis in Children in Southeast Nigeria. Pharmacoeconom Open. 2021;5(4):755–764.

231. Ughasoro MD, Onwujekwe OE, Ojinnaka NC. Economic cost of treatment of childhood epilepsy in Enugu, southeast Nigeria. Int J Technology Assessment in Health Care. 2014;30(4):469–474.

232. Umar U, Adamu H, Abdulkareem A. Economic evaluation of cerebral palsy in a resource-challenged setting. Niger J Basic Clin Sci. 2020;17(1):50–56.

233. Usuf E, Mackenzie G, Sambou S, Atherly D, Suraratdecha C. The economic burden of childhood pneumococcal diseases in The Gambia. Cost Eff Resour Allocation. 2016;14(1):559.

234. Vann WF, Divaris K, Gizlice Z, Baker AD, Lee JY, Vann WF. Caregivers’ health literacy and their young children’s oral-health-related expenditures. J Dent Res. 2013;92:S55.

235. Velandia MR, Carreño Moreno SP. Family Economic Burden Associated to Caring for Children with Cancer. Investigacion & Educacion en Enfermeria. 2018;36(1):70–82.

236. Vessey JA, DiFazio RL, Strout TD, Snyder BD. Impact of Non-medical Out-of-pocket Expenses on Families of Children With Cerebral Palsy Following Orthopaedic Surgery. J Pediatr Nurs. 2017;37:101–107.

237. Vohra R, Madhavan S, Sambamoorthi U, St Peter C. Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism. 2014;18(7):815–826.

238. Wang L, Zou H, Ye F, et al. Household financial burden of phenylketonuria and its impact on treatment in China: a cross-sectional study. J Inherit Metab Dis. 2017;40(3):369–376.

239. Wang N, Zhou S, Wang S, et al. Economic burden of Down syndrome patients and psychological and social discrimination to female caregivers in Changsha, China. Chung Hua I Hsueh I Chuan Hsueh Tsa Chih. 2022;39(1):11–15.

240. Warner EL, Kirchhoff AC, Nam GE, Fluchel M. Original Contribution. Financial Burden of Pediatric Cancer for Patients and Their Families. J Oncol Pract. 2015;11(1):12–18.

241. Watson SL, Stine F, Tumin D, Stiles KM. Employment and well-being among caregivers of children with autism spectrum disorder. Child Health Care. 2021;50(1):16–27.

242. Weaver MS, Wichman B, Bace S, et al. Measuring the Impact of the Home Health Nursing Shortage on Family Caregivers of Children Receiving Palliative Care. J Hosp Palliat Nurs. 2018;20(3):260–265.

243. Whittington MD, Knupp KG, Vanderveen G, Kim C, Gammaitoni A, Campbell JD. The direct and indirect costs of Dravet Syndrome. Epilepsy Behav. 2018;80:109–113.

244. Wright A, Crettenden A, Skinner N. Dads care too! Participation in paid employment and experiences of workplace flexibility for Australian fathers caring for children and young adults with disabilities. Community, Work & Family. 2016;19(3):340–361.

245. Wysocki J, Malecka I, Stryczynska-Kazubska J, Rampakakis E, Kuter B, Wolfson LJ. Varicella in Poland: economic burden in children 1-12 years of age in Poland, 2010-2015. BMC Public Health. 2018;18(1):410.

246. Zan H, Scharff RL. The heterogeneity in financial and time burden of caregiving to children with chronic conditions. Maternal Child Health J. 2015;19(3):615–625.

247. Zhao X, Page TF, Altszuler AR, et al. Family Burden of Raising a Child with ADHD. J Abnorm Child Psychol. 2019;47(8):1327–1338.

248. Zhao YN, Luo YN, Wang XY, Fan HY, Zhang R, Zheng XY. Research on the direct financial burden on families with 2-6 years old children having autism spectrum disorder in China. Chine J Dis Prevention. 2021;25(9):1085–1090.

249. Zheng Y, Jit M, Wu JT, et al. Economic costs and health-related quality of life for hand, foot and mouth disease (HFMD) patients in China. PLoS One. 2017;12(9):e0184266.

250. Zhou Y, Cai S, Jin M, et al. Economic burden for retinoblastoma patients in China. J Med Econ. 2020;23(12):1553–1557.

251. Zhou Z-Y, Koerper MA, Johnson KA, et al. Burden of illness: direct and indirect costs among persons with hemophilia A in the United States. J Med Econ. 2015;18(6):457–465.

252. Reilly MC, Zbrozek AS, Dukes EM. The validity and reproducibility of a work productivity and activity impairment instrument. Pharmacoeconomics. 1993;4(5):353–365.

253. Järbrink K, McCrone P, Fombonne E, Zandén H, Knapp M. Cost-impact of young adults with high-functioning autistic spectrum disorder. Res Dev Disabil. 2007;28(1):94–104.

254. Schwartz CE, Powell VE, Eldar-Lissai A. Measuring hemophilia caregiver burden: validation of the Hemophilia Caregiver Impact measure. Qual Life Res. 2017;26(9):2551–2562.

255. Holloway B, Mathur A, Pathak A, Bergström A. Utilisation of diagnostics in India: a rapid ethnographic study exploring context and behaviour. BMJ Open. 2020;10(11):e041087.

256. Laberge M, Coulibaly LP, Berthelot S, et al. Development and validation of an instrument to measure health-related out-of-pocket costs: the Cost for Patients Questionnaire (CoPaQ). Value Health. 2021;24(8):1172–1181.

257. Heidari S, Babor TF, De Castro P, Tort S, Curno M. Sex and Gender Equity in Research: rationale for the SAGER guidelines and recommended use. Res Integr Peer Rev. 2016;1:2.

258. Drummond M, Sculpher M, Claxton K, Stoddart G, Torrance G. Methods for the Economic Evaluation of Health Care Programmes. Fourth Edition ed. Oxford: Oxford University Press; 2015.

259. Johnson JL, Greaves L, Repta R. Better science with sex and gender: facilitating the use of a sex and gender-based analysis in health research. Int J Equity Health. 2009;8:14.

Creative Commons License © 2024 The Author(s). This work is published by Dove Medical Press Limited, and licensed under a Creative Commons Attribution License. The full terms of the License are available at The license permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.