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Children 12 (1): 49 (2025)
Children's Hospital (Vancouver, B.C.). Research Institute
St. Paul's Hospital (Vancouver, B.C.). Centre for Advancing Health Outcomes
Provincial Health Services Authority (B.C.)
Women's Health Research Institute (British Columbia)
Austin, Kennedy
Pistawka, Carly
Ross, Colin J. D.
Selby, Kathryn A.
Virani, Alice
Kitchin, Vanessa
Elliott, Alison M.
Background/Objectives: Empowerment has been associated with several positive outcomes in healthcare; however, there is limited insight on empowerment levels within the adolescent population of those with a chronic condition/disability. The aim of this scoping review was to identify gaps in the existing literature on empowerment levels within this population. Methods: Five databases (MEDLINE [Ovid], EMBASE [Ovid], PsycINFO [Ebsco], CINHAL [Ebsco] and Web of Science [UBC]) and grey literature were searched. Results: A total of 67 studies were included and used for data extraction including descriptive numerical analysis followed by a narrative review. Extracted data were divided into demographic characteristics (e.g., ethnicity/ancestry), type of disability/condition (e.g., type 1 diabetes), interventions used to increase empowerment or empowerment-adjacent elements, quantitative and qualitative tools used to measure empowerment (e.g., questionnaires and/or interviews), domains/outcomes associated with empowerment (e.g., self-control), and review articles. Several interventions were shown to have positive effects on empowerment levels in adolescents with a chronic condition/disability. Conclusions: Gaps were identified in the consideration of ethnicity/ancestry and socioeconomic status, demonstrating a need for future research in this space to focus on the intersection of disability, ethnicity/ancestry, and socio-economic status and the implementation of interventions promoting empowerment.
Academic Editor: Paul R. CarneyReceived: 22 November 2024Revised: 19 December 2024Accepted: 27 December 2024Published: 31 December 2024Citation: Austin, K.; Pistawka, C.;Ross, C.J.D.; Selby, K.A.; Virani, A.;Kitchin, V.; Elliott, A.M. Empowermentin Adolescent Patients with a Disability/Chronic Condition: A Scoping Review.Children 2025, 12, 49. https://doi.org/10.3390/children12010049Copyright: © 2024 by the authors.Licensee MDPI, Basel, Switzerland.This article is an open access articledistributed under the terms andconditions of the Creative CommonsAttribution (CC BY) license(https://creativecommons.org/licenses/by/4.0/).ReviewEmpowerment in Adolescent Patients with a Disability/ChronicCondition: A Scoping ReviewKennedy Austin 1 , Carly Pistawka 2, Colin J. D. Ross 1,2,3,4, Kathryn A. Selby 2,5 , Alice Virani 1,6, Vanessa Kitchin 7and Alison M. Elliott 1,2,8,*1 Department of Medical Genetics, University of British Columbia, Vancouver, BC V6T 1Z3, Canada;kaustin5@student.ubc.ca (K.A.); colin.ross@ubc.ca (C.J.D.R.); alice.virani@cw.bc.ca (A.V.)2 BC Children’s Hospital Research Institute, Vancouver, BC V5Z 4H4, Canada; carly.pistawka1@bcchr.ca (C.P.);kselby@cw.bc.ca (K.A.S.)3 Centre for Advancing Health Outcomes, St. Paul’s Hospital, Vancouver, BC V6Z 1Y6, Canada4 Faculty of Pharmaceutical Sciences, University of British Columbia (UBC), Vancouver, BC V6T 1Z3, Canada5 Department of Pediatrics, University of British Columbia, Vancouver, BC V6H 3V4, Canada6 Ethics Service, Provincial Health Services Authority, Vancouver, BC V6H 4C1, Canada7 Woodward Library, University of British Columbia, Vancouver, BC V6T 1Z3, Canada; vanessa.kitchin@ubc.ca8 Women’s Health Research Institute, Vancouver, BC V6H 3N1, Canada* Correspondence: aelliott@bcchr.ca; Tel.: +1-604-875-3790Abstract: Background/Objectives: Empowerment has been associated with several positiveoutcomes in healthcare; however, there is limited insight on empowerment levels withinthe adolescent population of those with a chronic condition/disability. The aim of thisscoping review was to identify gaps in the existing literature on empowerment levels withinthis population. Methods: Five databases (MEDLINE [Ovid], EMBASE [Ovid], PsycINFO[Ebsco], CINHAL [Ebsco] and Web of Science [UBC]) and grey literature were searched.Results: A total of 67 studies were included and used for data extraction including descrip-tive numerical analysis followed by a narrative review. Extracted data were divided intodemographic characteristics (e.g., ethnicity/ancestry), type of disability/condition (e.g.,type 1 diabetes), interventions used to increase empowerment or empowerment-adjacentelements, quantitative and qualitative tools used to measure empowerment (e.g., ques-tionnaires and/or interviews), domains/outcomes associated with empowerment (e.g.,self-control), and review articles. Several interventions were shown to have positive effectson empowerment levels in adolescents with a chronic condition/disability. Conclusions:Gaps were identified in the consideration of ethnicity/ancestry and socioeconomic status,demonstrating a need for future research in this space to focus on the intersection of disabil-ity, ethnicity/ancestry, and socio-economic status and the implementation of interventionspromoting empowerment.Keywords: empowerment; adolescents; disability; chronic condition1. IntroductionThe period of adolescence, defined by the World Health Organization as ages 10–19,is a critical stage in development that is accompanied by identity changes, often fuelledthrough life events such as living with a chronic condition or disability [1]. With thecontinuous growth of this population, it is important to understand their distinct needs andwork to improve adolescent health-related outcomes [2]. One key health-related outcomebeing studied in the adolescent population is empowerment [3,4].Children 2025, 12, 49 https://doi.org/10.3390/children12010049Children 2025, 12, 49 2 of 21Empowerment has numerous and varied definitions, all of which were consideredfor this scoping review [5,6]. Some recurring themes of empowerment include a senseof self-control, self-efficacy, self-determination, and self-confidence, attributed with highlevels of self-esteem and a positive self-concept [6–8]. Health-related empowerment in-volves feelings of control over health-related matters and the ability to manage one’s owndisability [9]. Additionally, providing patients with increased knowledge and skills relatedto their condition is associated with high levels of empowerment [5], and it has been foundthat supporting adolescents’ empowerment promotes positive development [10].While empowerment has been observed as an important aspect in patient healthcare,there are limited studies regarding adolescent-perceived empowerment levels related todisability. Previous research has demonstrated an association between increased reports ofempowerment in patients and an improvement in clinical outcomes, pain management,treatment satisfaction, and positive emotions [11]. Most studies, however, have focusedprimarily on adult populations with chronic conditions such as cancer and diabetes. Inboth disorders, it was shown that patients with increased levels of empowerment have agreater sense of self-control related to their diagnosis [12–14]. There is, however, a lack ofunderstanding regarding levels of empowerment within the adolescent population of thosewith a chronic condition or disability.The term “disability” is an umbrella term encompassing the impairments resultingfrom an injury or disease, as well as the physical and/or emotional functional limitationsone develops as a result of impairments [15]. Disability also refers to, and recognizesthe impact on, an individual caused by apparent environmental restrictions or exclusionspresent due to one’s impairments [15]. This scoping review includes apparent (e.g., muscu-lar dystrophy) and non-apparent disabilities (e.g., intellectual disability), as well as geneticand non-genetic chronic health conditions. This was done in an attempt to gain a broadoverview and understanding of empowerment in adolescents with a variety of disabilities.The objective of this scoping review was to provide an overview of the existing litera-ture on empowerment levels in adolescent patients with a chronic condition or disability.2. MethodsThis scoping review followed the methodological framework described by Arkseyand O’Malley [16] which includes identifying a research question followed by identify-ing and selecting relevant studies, charting the data and reporting the findings, alongwith refinements proposed to this framework by Colquhoun et al. [17] (recommenda-tions of a consistent label and definition of the term “scoping review”), as well as thePRISMA-ScR statement [18]. The protocol was registered on OSF (OSF | Scoping ReviewProtocol- Kennedy Austin.docx, available online: https://osf.io/ur2hm; accessed on14 November 2023).2.1. Search StrategyThe search strategy aimed to identify published articles, unpublished studies, andgrey literature. The search strategy was designed in collaboration with a UBC healthsciences librarian (VK) and subject expert (AME) and underwent a Peer Review of Elec-tronic Search Strategy (PRESS) by a secondary research librarian. Five databases wereused for the search: MEDLINE (OVID), EMBASE (OVID), PsycINFO (EBSCO), CINHAL(EBSCO), and Web of Science (University of British Columbia Institutional Access). Chronicdisease/disorder/condition, disability, empower/empowerment, pediatrics, adolescent,child, young adult, and youth were used as key search terms for this scoping review. Thefull search strategies are available in Supplementary Materials (Supplementary Table S1A).Children 2025, 12, 49 3 of 21Supplemental searches of grey literature included the first 30 pages of the sites found viaGoogle Scholar as recommended by Haddaway et al. [19]2.2. Study SelectionStudies were screened in Covidence in a two-step process. The initial screeningprocess involved title and abstract screening, followed by a secondary full-text screening ofarticles. Studies excluded in the secondary full-text screening were recorded with reasonfor exclusion. Duplicate studies were both automatically removed via Covidence andmanually removed by the reviewers. All articles were screened by the first author (KA) andsecond author (CP). Any conflicts between the reviewers were resolved through discussion,or with an additional reviewer (AME).Studies that included/covered/reviewed/analyzed the evaluation of patient empow-erment in the adolescent population of those with a chronic condition or disability wereincluded in the scoping review. Adolescents were considered between the ages of 10 and19, as defined by the World Health Organization [20]. Articles that included the perspectiveof adolescents with any chronic condition or disability (both apparent and non-apparent)were included. The study design was not restricted in an attempt to map the literatureand identify knowledge gaps in these settings. Studies including data of participants bothwithin and outside of the 10–19 age range were included if data within the age rangecould be clearly identified. Studies measuring/evaluating empowerment were included.Studies which developed or validated tools for measuring empowerment were includedonly if implementation of the tool(s) and data analysis occurred within the adolescentpopulation. Studies measuring outcomes adjacent to empowerment (e.g., quality of life,shared decision making, etc.) were excluded if empowerment was not also measured asan outcome. Studies measuring outcomes related to transition-readiness or transition inhealthcare were excluded if empowerment was not also measured as an outcome. Studieswere limited to English language. We included studies with publication types includingpeer-reviewed journal articles, dissertations, and grey literature. Studies in the form ofconferences, posters, or meeting abstracts were excluded. Studies that were not accessiblethrough the UBC library database were excluded during full-text screening. The searchwas ended on October 25th, 2023; all studies published before this date were screened.2.3. Data ExtractionData were extracted from articles that met the inclusion criteria and were includedin the scoping review. The extracted data included recorded information with specificdetails about the first author, title, year of publication, journal name, type of publication,country of publication, age range, ethnicity/ancestry, socioeconomic status, gender/sexof participants, type of disability/condition, intervention used in population, study de-sign, qualitative methods, quantitative methods, use of control group, objectives, andempowerment-related outcomes (Supplementary Table S1B). Descriptive analysis wascarried out on variables of interest and presented in multiple figures and tabular formsto organize the extracted data. A narrative summary was included in this scoping reviewto further explore generated themes and to provide information regarding gaps in theevaluation of empowerment in adolescent patients with a chronic condition or disability.Extracted data were divided into (1) descriptive numerical analysis and demographiccharacteristics (i.e., age range, country of publication, ethnicity/ancestry, socioeconomicstatus, and sex/gender), (2) type of disability/condition (e.g., type 1 diabetes, neurodevel-opmental, neuromuscular, autoimmune, etc.), (3) interventions used within the popula-tion to increase empowerment or empowerment-adjacent elements, (4) quantitative andChildren 2025, 12, 49 4 of 21qualitative tools used to measure empowerment (e.g., questionnaires and/or interviews),(5) domains and outcomes associated with empowerment, and (6) review articles.3. ResultsThe search across the databases and grey literature yielded 13,014 citations (n = 12,714from databases, n = 300 from grey literature). A total of 3225 references were excludedas duplicates (3126 identified by Covidence and 99 identified manually by the reviewers).Initial screening of 9789 title and abstracts resulted in the exclusion of 8375 studies notmeeting the inclusion criteria. A total of 1414 studies were retrieved for full-text screeningwhere 1347 studies were excluded for the following reasons: empowerment not evaluated(n = 496), incorrect age range (n = 244), clinical guidelines only (n = 121), wrong perspective(e.g., parents, healthcare providers) (n = 121), not accessible through UBC library (n = 91),empowerment-adjacent (n = 90), transition in healthcare (n = 61), tool validation/protocol(n = 55), not in English (n = 30), abstract or conference proceeding (n = 23), non-medicalcondition (n = 13), and commentary (n = 2). A total of 67 articles were included in the finalreview [3,21–86] (alphabetically ordered based on author in Supplementary Table S2A,B).A PRISMA flow diagram is included which tracks the number of studies included andexcluded in the review (Figure 1).Children 2025, 12, 49 5 of 21Identification References from other sources (n = 300) Grey literature (n = 300) Studies assessed for eligibility (n = 1414) References removed (n = 3225) Duplicates identified manually (n = 99) Duplicates identified by Covidence (n = 3126) Studies excluded (n = 8375) Studies excluded (n = 1347) Empowerment not evaluated (n = 496) Wrong age range (n = 244) Clinical guidelines/suggestions (n = 121) Wrong perspective (n = 121) Not accessible (n = 91) Empowerment adjacent (n = 90) Transition in healthcare (n = 61) Tool validation/protocol (n = 55) Not in English (n = 30) Abstract or conference proceeding (n = 23) Non-medical condition (n = 13) Commentary (n = 2) Included Studies included in review (n = 67) Screening Studies from databases/registers (n = 12,714) Embase/MEDLINE (n = 5134) CINAHL (n = 4000) Web of Science (n = 3533) PsycINFO (n = 47) Studies screened (n = 9789) Figure 1. PRISMA flow diagram of study selection process.3.1. Descriptive Numerical Analysis and DemographicsOf the 67 included studies, one study was published between 1990 and 2000,six were published between 2001 and 2010, 14 were published between 2011 and 2015,25 were published between 2016 and 2020, and 21 were published between 2021 andOctober of 2023 (Figure 2).Children 2025, 12, 49 6 of 21 x FOR PEER REVIEW 6 of 21 Figure 2. Studies by year of publication. Demographic characteristics were extracted from the original research studies (n = 61) [21–81]. Data from the included review articles (n = 6) [3,82–86] were analyzed sepa-rately. The extracted demographic data included age range of participants, country of publication, ethnicity/ancestry, socioeconomic status, and gender/sex of participants. 3.2. Age Range of Participants This scoping review included studies with an adolescent (ages 10–19 years) perspec-tive. Of the 61 original research articles included in this review, 59 provided a participant age range, while two studies did not provide an age range and only included the mean age of participants [24,39]. The youngest age reported was from one study with an age range of 5–18 years [52], while the oldest age reported was from a study with an age range of 10–52 years [48]. Both studies included separate results related to empowerment of in-dividuals within the 10–19 age range. Five studies included individuals exclusively 15 years and younger [25,45,47,61,81], three of which included individuals exclusively 13 years and younger [25,45,81]. Nineteen studies included individuals exclusively aged 14 years and older [22,23,27–29,31,37,40,43,46,51,56,58,59,63,68,73,78,79], six of which included individuals exclusively aged 16 years and older [23,29,31,58,63,78]. Thirty-four studies provided an age range in-cluding both individuals aged 13 years and younger as well as individuals aged 16 years and older [21,26,30,32–36,38,41,42,44,49,50,52–55,57,60,62,64–67,69–72,74–77,80]. A full breakdown of participant age range included in each study can be found in Supplemen-tary Table S2A. 3.3. Country of Publication The country of publication of the original research studies included the United States (n = 21, 34.4%) [27,31–33,39,46,48,49,53,56–58,60,61,63,66,69,72,77,78,81], the United King-dom/Sweden (n = 6 each, 11.8%) [21–23,29,40,45,50,54,55,67,76,80], Netherlands/Australia (n = 4 each, 7.8%) [24,26,30,44,64,71,74,75], Canada (n = 3, 5.9%) [51,52,68], Norway/South 0246810121990 -20002001 -20102011 2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023FrequencyYear of publicationi . t i f li ti .r ic characteristics wer extracted from the original research studies(n = 61) [21–81]. Data from the included review articles (n = 6) [3,82–86] were analyzedseparately. The ex racted demographic data inclu ed age range of participants, countryli i , i i ancestry, socioec ic st t s, r sex of participants.3.2. Age Range of ParticipantsThis scoping review included studies with an adolescent (ages 10–19 years) perspec-tive. Of the 61 original research articles included in this review, 59 provided a participantage range, while two studies did not provide an age range and only included the mean ageof participants [24,39]. The youngest age reported was from one study with an age rangeof 5–18 years [52], while the oldest age reported was from a study with an age range of10–52 years [48]. Both studies included separate results related to empowerment of individ-uals within the 10–19 age range.Five studies included individuals exclusively 15 years andyounger [25,45,47,61,81], three of which included individuals exclusively 13 years andyounger [25,45,81]. Nineteen studies included individuals exclusively aged 14 years andolder [22,23,27–29,31,37,40,43,46,51,56,58,59,63,68,73,78,79], six of which included individu-als exclusively aged 16 years and older [23,29,31,58,63,78]. Thirty-four studies provided anage range including both individuals aged 13 years and younger as well as individuals aged16 years and older [21,26,30,32–36,38,41,42,44,49,50,52–55,57,60,62,64–67,69–72,74–77,80].A full breakdown of participant age range included in each study can be foundin Supplementary Table S2A.3.3. Country of PublicationThe country of publication of the original research studies included theUnited States (n= 21, 34.4%) [27,31–33,39,46,48,49,53,56–58,60,61,63,66,69,72,77,78,81], theUnited Kingdom/Sweden (n= 6 each, 11.8%) [21–23,29,40,45,50,54,55,67,76,80],Children 2025, 12, 49 7 of 21Netherlands/Australia (n= 4 each, 7.8%) [24,26,30,44,64,71,74,75], Canada (n= 3,5.9%) [51,52,68], Norway/South Africa/Romania/Brazil/Multi-country (n= 2 each,3.9%) [25,28,34,35,37,38,42,65,73,79], and North India/Italy/Poland/Israel/Iran/Portugal/Kuwait (n= 1 each, 1.6%) [36,41,43,47,59,62,70].3.4. Ethnicity/Ancestry of ParticipantsOf the 61 original research and dissertation studies, 23 studies provided infor-mation about ethnicity/ancestry/race. Nineteen of these studies provided num-bers and/or percentages of the self-reported ethnic/ancestral groups included in thestudies [27,31–33,39,40,46,49,50,53,56–58,60,63,69,71,72,80]. Of these 19 studies, 13 reportedthat the majority (>50%) of individuals identified as white/white non-Hispanic/whiteBritish/European American. African American/black individuals were represented in15 of these studies. Hispanic/Latino/Spanish individuals were represented in 10 of thesestudies. Eight studies included individuals who were Asian/south Asian. One studyincluded individuals who identified as Native American or Arab.3.5. Socioeconomic Status of ParticipantsEleven studies included individuals’ socioeconomic status. Five included indi-viduals predominately from a low socioeconomic status/economically disadvantagedarea [39,41,43,72,81], while two studies were conducted in low to moderate/middle so-cioeconomic status areas [28,78]. Two studies represented a mix of low, medium/middle,and high socioeconomic status [35,61]. One study included individuals mostly from themiddle and middle upper class [31], and one study provided the mean household incomefor individuals [49].3.6. Gender/Sex of ParticipantsFifty-five studies included information about the gender/sex of the participants.Six studies included over 70% male participants [24,26,32,33,49,67], while eleven studiesincluded over 70% female participants [45–47,50,54–56,63,65,68,69]. Of the eleven female-dominated studies, three studies did not include any males (100% female) [45,56,63]. Therewere no studies that included only males. One study included five non-binary individuals [60].3.7. Type of Conditions/DisabilitiesThe types of conditions/disabilities represented in the studies includedtype 1 diabetes (n = 10, 16%) [21,36,38,52,57,59,65,70,73,79], intellectual disability(n = 10, 16%) [30,34,35,43,49,56,58,74,75,77], neurobehavioral disorders (n = 8,13%) [24,27,28,32,33,39,61,78], multiple disorders (n = 8, 13%) [41,51,55,62,66,68,76,80], neu-ropsychiatric disorders (n = 5, 8%) [31,40,53,64,67], neuro/neuromuscular disorders (n = 4,7%) [37,44,47,48], did not specify (n = 4, 7%) [25,29,50,72], cardiovascular (n = 2, 3%) [22,23],gastrointestinal (n = 2, 3%) [26,45], renal (n = 2, 3%) [42,71], respiratory (n = 2, 3%) [46,81],autoimmune (n = 1, 2%) [69], deafness (n = 1, 2%) [60], cancer (n = 1, 2%) [54], and other(n = 1, 2%) [63] (Figure 3).The studies represented in the intellectual disability (ID) category included partici-pants with ID, as well as participants with ID or learning disabilities (LD). Neurobehavioraldisorders included those with autism spectrum disorders (ASDs), attention deficit hy-peractivity disorder, LD, and/or those who require special accommodations/education.Neuropsychiatric disorders included depression, generalized anxiety disorder, psychosis,bipolar disorder, eating disorders, and/or mood disorders. Neuro/neuromuscular disor-ders included cerebral palsy, epilepsy, spastic diplegia, spastic hemiplegia, spinal muscularatrophy, and/or muscular dystrophy. Additional disorders were divided into categoriesbased on organ systems (e.g., congenital heart disease was categorized as cardiovascular).Children 2025, 12, 49 8 of 21Studies with multiple conditions falling into more than one category were placed in the‘multiple’ section (e.g., studies including both multifactorial and congenital anomalieswere placed in the multiple section). One study focusing on individuals with inheritedbleeding disorders was placed in the ‘other’ category, as it did not fit in any other cate-gories. A full breakdown of each condition/disability included in each study can be foundin Supplementary Table S2.Children 2025, 12, x FOR PEER REVIEW 8 of 21 car iovascular). Studies with multiple conditi ns falling into m e than one category were laced in the ‘multiple’ section (e.g., studies including both multifactorial and con-genital nomalies were placed in the multiple secti n). One study focusing on individuals with inherited bleeding disorders was plac d in the ‘other’ category, as it did not fit in ny other categories. A full breakdown of each condition/disability i cluded in ea h study can be found in Supplementary Table S2. Figure 3. Types of conditions/disabilities represented in studies. 4. Interventions Of the 61 original research studies, 30 (49% of studies) administered/designed some form of an intervention within the population to improve empowerment or empower-ment-adjacent elements (i.e., self-efficacy, shared decision making, etc.). Empowerment was measured as an outcome following all interventions. The interventions were administered/designed in an in-person/group format (n = 20, 66.7%), or an online format (n = 8, 26.7%). Two interventions were placed in the ‘other’ category, as they were not in-person/group or online interventions (n = 2, 6.7%). Seven of the studies administering/designing an intervention compared results between an inter-vention and non-intervention group (control), and four of these studies determined that empowerment was higher in the intervention groups compared to the control. Twenty-three studies did not include a control group; however, seven of these studies compared empowerment levels at pre- and post-intervention stages. In six of these studies, empow-erment levels were reported to have increased after the intervention. In fifteen of the stud-ies without a control group, participants reported that the intervention was empowering (Table 1). Type 1 Diabetes16%Intellectual disability16%Neurobehavioural disorders13%Multiple disorders13%Neuropsychiatric disorders8%Neuro/neuromuscular disorders7%Did not specify7%Cardiovascular3%Gastrointestinal3%Renal3%Respiratory3%Autoimmune2%Deafness2%Cancer2%Other2%i re 3. es f c iti s disabilities re rese te i st ies.. I t r ti sf the 61 original research studies, 30 (49 of studies) ad inistered/designed so efor of an intervention within the population to improve empowerment or empowerment-adjacent elements (i.e., self-efficacy, shared decision making, etc.). Empowerment wasmeasured as an outcome following all interventions.The interventions were administered/designed in an in-person/group format (n = 20,66.7%), or an online format (n = 8, 26.7%). Two interventions were placed in the ‘other’ cat-egory, as they were not in-person/group or online interventions (n = 2, 6.7%). Seven of thestudies administering/designing an intervention compared results between an interventionand non-intervention group (control), and four of these studies determined that empower-ment was higher in the intervention groups compared to the control. Twenty-three studiesdid not include a control group; however, seven of these studies compared empowermentlevels at pre- and post-intervention stages. In six of these studies, empowerment levelswere reported to have increased after the intervention. In fifteen of the studies without acontrol group, participants reported that the intervention was empowering (Table 1).Children 2025, 12, 49 9 of 21Table 1. Intervention summaries and outcomes.Goal of Intervention Length of Intervention ControlGroupEmpowerment RelatedOutcome(s) Ref.In-person/group activities:School curriculum (n = 8)Self-advocacy instruction to educatestudents about their disability anddevelop self-advocacy skillsOne-quarter-long highschool class NoParticipants reported higherempowerment levels afterintervention (comparedto baseline)[27]School-to-work internship programdesigned to provide students withfunctional and vocationalpost-secondary skillsFull-year program YesIntervention did not showsignificant increase inempowerment compared tocontrol group[39]Paths to the future (P2F) program topromote self-efficacy/awareness,disability knowledge, and gender identity75 lessons divided into4 modules NoParticipants reported higherempowerment levels afterintervention (comparedto baseline)[56]Peers Engaged in EffectiveRelationships-Decision Making(PEER-DM) to promote decision making,self-determination/evaluation/advocacy,and goal setting45 min class once perweek over six weeks YesHigher empowerment wasreported in intervention groupcompared to control[58]Eye to Eye program organized bymentoring students with LD teachessocial–emotional learning strategiesthrough an art-based curriculumOne-year after-schoolprogram + 5-daysummer programNoParticipants reported feelingempowered throughthe intervention[61]TAKE CHARGE intervention based on amulti-component self-determinationmodel designed to increase motivationand self-efficacy including mentorshipfor adolescentsOne semester(weekly 50 mincoaching sessions)NoParticipants reported higherempowerment levels afterintervention (comparedto baseline)[66]Project-based learning (PBL) instructionalapproach to engage students tocollaborate and initiate criticalthinking/reflectionOne semester (everyother day) NoParticipants reported feelingempowered afterthe intervention[68]Choice maker curriculum enablesstudents to learn self-determination skillsand achieve their goals4-week intervention NoOverall reported increase inself-determination, butempowerment did notspecifically increase as asub-domain ofself-determination (comparedto baseline)[78]In-person/group activities:Adolescents as researchpartners/collaborators(n = 5)Leadership program where group leadersdesigned sessions to provide adolescentswith more initiative overtime andeventually develop a research theme andconduct a small-scale research project8 meetings over4 months NoParticipants reported feelingempowered as research partners [25]Co-led participatory research project withdisabled participants to develop aresearch agenda to address a quality- andrights-based approach forplanning futures15-monthresearch project NoParticipants identified the need tofeel engaged in the researchproject to promote empowerment[29]Children 2025, 12, 49 10 of 21Table 1. Cont.Goal of Intervention Length of Intervention ControlGroupEmpowerment RelatedOutcome(s) Ref.Community-based rehabilitation programto promote engagement and collaborationwhere participants help toorganize studies6 disseminationsessions NoParticipants reported thatgroup-centered rehabilitation ledto group empowerment[41]Young leaders in diabetes learningknowledge and skills to manage theircondition and are encouraged to developnew projects at the end of trainingOne-semester-long training NoParticipants moved up theempowerment ladder (felt moreempowered) after training[73]SMART program to improve asthmaknowledge formed through acollaborative research process wherestudents are partners and integrate theirown perspectivesTwice a week for20 weeks NoParticipants reported higherempowerment levels afterintervention (comparedto baseline)[81]In-person/group activities:Community-based programs(n = 3)KONTAKT Social skills group trainingsessions promoting socialinteraction/communication skills,problem solving, and confidence12–24 sessions(60–90 min per week) No61% of participants reportedfeeling more empowered afterthe intervention[24]Residential immersive life skills (RILS)program takes place in college residencesto build communication skills3 weeks YesParticipants reported asignificant increase inpsychological empowerment3 months after intervention andcompared to control[51]Pilot structured education programdesigned to include knowledge aboutdiabetes pathophysiology to enableadolescents with T1D to developself-management skills3 days NoParticipants reported that theintervention led to knowledgeand empowerment[70]In-person/group activities:Therapeutic program(n = 2)Expressive music therapy in groupsessions to achieve therapeutic change16 sessions (heldweekly) NoParticipants reported that theintervention was anempowering experience[64]Therapeutic recreation summer camphelps campers realize their abilities anddevelop coping strategies, resilience,and independence5-day residentialactivity camps NoParticipants reported higherempowerment levels afterintervention (comparedto baseline)[80]In-person/group activities:Physical activities (n = 2)Dance and yoga intervention called TIME(Try, Identify, Move, and Enjoy) built onthe foundation ofself-determination theoryTwice weekly for eightmonths (30 min ofdance, 25 min of yoga,5 min of reflection)NoParticipants reported that theintervention led to feelingsof empowerment[45]Power soccer using motorizedwheelchairs to promote self-efficacy andcommunicationAthletes had beenplaying for upto 10 yearsNoParticipants reported thatplaying power soccer leadsto empowermentand independence[48]Children 2025, 12, 49 11 of 21Table 1. Cont.Goal of Intervention Length of Intervention ControlGroupEmpowerment RelatedOutcome(s) Ref.Online:Diabetes self-management (n = 4)Continuous glucose monitoring (CGM) +ehealth care program with nursesproviding advice through texts/calls tohelp set glycemic control goalswith patients2-week programrepeated after 3, 6, and12 months (option tocontinue if moresupport was needed)YesParticipants reported asignificant increase inempowerment in interventioncompared to control group[21]Serious game play for diabetes healthdesigned to enhance knowledge andmanagement of diabetes while alsoproviding entertainment6 training sessions(2 h each) followed by20 min of gameplayNoParticipants reported feelingempowered after playingthe game[36]Mobile phone-based visualization tool tounderstand food intake including a fooddiary and diabetes message system topromote knowledge and self-management3 full days (at least2 days weremandatory)No Participants reported feelingempowered after using the tool [38]CGM to allow participants to measuretheir glucose levels in real time and helpto manage their diabetesParticipants had beenusing CGM for at least3 monthsNo Participants reported that usingCGM was empowering [79]Online:Educational programs(n = 2)Online education program about SystemicLupus Erythematosus (SLE) wherefeedback and questions were encouragedfrom participants8 modules over 8 weeks YesHigher empowerment wasreported in intervention groupcompared to control[69]The Growth Factory (TGF) onlineintervention providing a structuredlearning environment for youth with IDfocusing on key growthmindset affirmations6 sessions over 6 weeks(25–45 min each) YesIntervention did not showsignificant increase inempowerment compared tocontrol group[75]Online:Development of tools with participants(n = 2)An educational video intervention wasco-designed with participants to improveyouth question askingSingle interview NoParticipants reported that beinginvolved in research anddesigning the videowas empowering[65]Ideas gained from a formative study tohelp develop a digital decision supporttool to help increase adolescentparticipation, self-efficacy, and autonomySingle interview NoParticipants reported feelingempowered throughinvolvement and support[76]Other (n = 2)Transanal irrigation (TAI) used to treatfecal inconsistent and constipation andimprove adherence, independence, andquality of life1 month and 6-monthfollow-upafter treatmentNoParticipants reportedempowerment levels afterintervention (consistent withempowerment levels seen inpatients with other typesof conditions)[26]Skills for growing up epilepsycommunication tool addressingknowledge and skills required forself-management and autonomy indaily functioningTool used once YesNo difference in empowermentlevels reported betweenintervention and control groups[44]Children 2025, 12, 49 12 of 214.1. Tools Used to Measure EmpowermentIn total, 27 studies (44.3%) utilized a quantitative study design with various toolsincluding scales and questionnaires to measure empowerment, while 26 studies (42.6%)utilized a qualitative study design with various tools including interviews, focus groups,and journal entries to measure empowerment. Qualitative data were analyzed usingthematic coding analysis for all studies. Eight studies (13.1%) utilized a mixed-methodsstudy design to measure empowerment. In total, the most common quantitative tools usedto measure empowerment were the ARC-Self-determination scale (SDS) (n = 11) and theGothenburg Young Person’s Empowerment Scale (GYPES) (n = 6). The most commonqualitative tools were interviews (n = 31) and focus groups (n = 8) (Table 2).Table 2. Summary of tools used to measure empowerment.Study Design Tool Used to Measure Empowerment Ref(s).Quantitative(n = 27)ARC-SDS: psychological empowermentmeasured as a sub-domain (n = 7) [32–35,37,58,78]GYPES (n = 5) [21–23,26,46]Diabetes Empowerment Scale (DES) (n = 3) [36,57,59]Quality of Life (QOL) questionnaire (n = 2) [39,43]Dutch questionnaire: EMPO youth 2.0 (n = 2) [74,75]Quality of Student Life questionnaire (QSLQ)(n = 1) [30]ASL Self-determination inventory (n = 1) [60]Family Empowerment Scale (FES) (n = 1) [66]Validated Empowerment Likert Scale (n = 1) [69]Health self-empowerment theory variables (n = 1) [72]Young Leaders in Diabetes (YLD) training testscores (pre- and post- intervention) (n = 1) [73]Adult Nowicki–Strickland Internal–ExternalScale (ANS-IE), Intellectual AchievementResponsibility Questionnaire (IARQ),Self-efficacy and Outcome Expectancy Scale(n = 1)[77]Sociopolitical Control Scale for youth (n = 1) [81]Qualitative(n = 26)Interviews (n = 20) [24,28,29,31,38,40,45,47,48,50,52,53,55,63,67,68,70,76,79,80]Interviews + focus groups (n = 4) [25,41,61,65]Focus groups (n = 1) [42]Interviews + journal entries (n = 1) [71]Mixed methods(n = 8)Interviews and/or focus groups + ARC SDS(n = 4) [27,49,51,56]Focus groups + GYPES (n = 1) [44]Interviews + integrative literature review(n = 1) [54]Interviews + focus groups + self-reportquestionnaires (n = 1) [62]Interviews + feedback questionnaires (n = 1) [64]Children 2025, 12, 49 13 of 214.2. Domains and Outcomes Associated with EmpowermentSeveral articles identified domains and outcomes associated with empowerment.These were identified in quantitative studies as having a correlation with empowermentlevels in various scales or questionnaires and were identified in qualitative studies ascommon themes emerging from interviews/focus groups associated with empowerment.These outcomes included self-control (n = 14) [27,30,32,33,40,50,52,58,59,68,70,77,79,81],self-determination (n = 12) [27,32–35,37,49,56,58,60,68,78], self-confidence/esteem/worth/concept/expression (n = 12) [24,25,35,45,48,49,51,57,61,68,75,80], a sense of be-longing/community/support/involvement (n = 12) [28,30,31,40,41,45,49,53,61,69,76,81],shared decision making/participation (n = 11) [25,29,31,40–42,50,54,55,65,76], self-efficacy(n = 8) [32,33,35,48,68,69,77], self-management/treatment/care (n = 7) [21,31,38,53,71,73,79],autonomy (n = 7) [27,35,51,68,71,73,76], increased knowledge/skills/information(n = 7) [29,31,38,48,54,70,73], independence (n = 5) [24,26,39,43,76], self-advocacy(n = 4) [27,56,61,73], higher quality of life (n = 4) [30,39,43,81], receiving a diagno-sis/owning one’s disability label (n = 4) [31,35,61,81], and improved treatment adher-ence (n = 3) [36,46,69].4.3. Review ArticlesSix review articles were included in this scoping review. Three focused on under-standing the impact of interventions in young individuals with chronic disease/long-termconditions. These included mental health [84], mobile health [85], and patient educa-tion [86] interventions, all of which identified empowerment as an outcome. Two otherstudies identified empowerment as a theme in young individuals with epilepsy [83] andcystic fibrosis [3]. One review focused on patient family-centered care in young individualswith various chronic conditions and found empowerment as an outcome associated withengagement and collaborative care [82].5. DiscussionThis is the first scoping review to identify evidence of empowerment in adolescentswith a disability/chronic condition. We will highlight topics including countries of publica-tion, demographic variables, types of conditions, interventions described (including theinvolvement of adolescents as research partners), domains associated with empowerment,and finally, instruments used to measure empowerment. The results of this scoping reviewindicated that there were a greater number of studies including participants over the age of16 compared those including participants under the age of 13. Two studies reported higherlevels of empowerment in older individuals compared to younger individuals [22,44];however, one study found that empowerment levels in individuals with diabetes decreasedwith increased duration of disease (i.e., older individuals) [59]. This contradiction signifiesthe importance of future research in this field, including a large age range of adolescentperspectives to gain insight into different levels of empowerment observed in youngercompared to older adolescents.The high proportion of US-based studies included in this review (34.4%) was consistentwith reviews similar in nature when empowerment and other similar themes (e.g., self-efficacy) were evaluated. Four of the six review articles included in this scoping reviewreported that over 40% of included studies were published in the US [3,84–86]. In ourreview, the two most common disabilities/chronic conditions included were type 1 diabetesand intellectual disability (each 16%). However, these disabilities/chronic conditions havebeen reported as having lower incidence/prevalence rates in the US compared to othercountries [87,88]. Population-based studies have determined that intellectual disability inchildren/adolescents is more common in low- and middle-income countries (i.e., India,Children 2025, 12, 49 14 of 21Pakistan, Bangladesh, etc.) [87], and epidemiological data have determined that NorthernEurope has the highest rate of type 1 diabetes [88]. Given the contrast in the rates of theseconditions compared to the geographical location where the research took place (primarilyin the US), we emphasize the importance of this research in countries outside of the US tocapture the lived experiences of a diverse range of individuals.Ethnicity/ancestry, socioeconomic status, and gender/sex of participants were re-ported in less than half of the studies included in this review, and few studies includedsignificant findings of empowerment compared between these demographic groups. Onestudy found that psychological empowerment and community participation was partiallymediated by the socioeconomic status of participants [37]. Additionally, lower qualityof life has been reported in children with chronic disease in lower socio-economic back-grounds [89]. This signifies an important gap in research where demographic characteristicsare not being considered or consistently observed, as they may represent critical findings.A review aiming to explore the lived experiences of ethnic minority youth with disabil-ities highlighted this importance and identified themes within this population such asenvironmental and systemic barriers in navigating healthcare. The authors also indicatedthe importance of the intersectionality of disability, ethnicity, socioeconomic status, andgender/sex [90].Our review included a broad range of disabilities/chronic conditions to generate com-mon themes across the literature and across varying conditions. It was found that manystudies including a wide variety of conditions administered interventions and reportedoutcomes related to empowerment. Some interventions were administered in an onlineformat, which was common in studies aiming to promote self-management/treatment/carein young individuals with type 1 diabetes [21,36,38,79]. Self-management of diabetes andglycemic control has been reviewed extensively in the literature [91], though less frequentlyin the adolescent population. It has been reported that self-management of diabetes iseffective in increasing glycemic control; however, work needs to be carried out in evaluat-ing the psychosocial outcomes of self-management in children and adolescents [91]. Ourreview identified studies demonstrating high levels of empowerment following interven-tions to improve self-management of diabetes [21,36,38,79]; however other mental healthimplications such as depression and diabetes distress should also be considered [91]. Onestudy included in our review identified that individuals ranged from feeling empoweredto feeling fearful in self-management of their diabetes [52]. Additionally, it is important torecognize the role that socioeconomic factors play in the self-management of diabetes tobest understand how to develop and integrate the appropriate tools necessary to supportdifferent populations. This gap is evident in our review where these factors are not widelyconsidered, and these considerations have been discussed specifically within the type 1diabetes population [92].Interventions also commonly occurred within the ID, neurobehavioral, and neuropsy-chiatric disorder populations, where many studies reported an increase in empowermentlevels post-intervention [24,27,56,58,61,64,75]. Although some studies without interven-tions identified a general trend of high empowerment levels within these populations,others reported low empowerment levels, specifically in individuals with ID [30,43,74,77]or ASD [33]. One study identified that individuals with ID had higher empowermentscores when receiving parental and classroom support, highlighting the importance ofsupport resources within this population [49]. A systematic review and meta-analysiscompiling data on interventions used to promote self-determination in individuals with IDhighlighted the need for further research to help facilitate supportive environments to helpmeet the psychological needs of this population [93].Children 2025, 12, 49 15 of 21Another theme amongst the interventions identified in this review was the use ofadolescents as research partners leading to feelings of empowerment [25,29,41,73,81]. Ascoping review on adolescents as co-researchers was conducted in 2021 and found sim-ilar results of increased empowerment, increased knowledge and skills, and increasedself-esteem [94]. Based on these findings, in conjunction with our review, we suggestthat strategies and interventions used to promote empowerment or outcomes related toempowerment consider involving adolescents as collaborators or partners in research.However, this review also noted the gap in our understanding of the ethical implicationsstemming from involving young individuals in research as well as time consumption andfunding issues [94]. Although the findings from studies included in our review wereprimarily positive, it is important to consider these additional factors when conductingstudies including adolescent research partners.Of the included domains associated with empowerment identified in this review,self-control was observed most frequently. In another review, self-control along withself-efficacy, self-management, and increased knowledge of condition were all observedas outcomes associated with psycho-educational interventions for children with chronicdisease [95]. These themes were all found to be linked to empowerment in our scopingreview. It has also been found that implementation of a family-centered empowermentprogram in adolescents with thalassemia major resulted in a significant increase in self-efficacy [96]. In a systematic review and meta-ethnography study, empowerment wasdescribed in a conceptual model to understand what aspects of mental health interventionschildren and young people with long-term physical conditions found most important.This study found that empowerment was facilitated via self-esteem and was linked toincreased social support [84]. Our review also identified the importance of self-esteem andsocial support/community involvement in promoting empowerment. We suggest thatfuture research continue to develop, implement, and observe empowerment interventionswithin the adolescent population of disabled individuals and focus on further evaluationof these key outcomes. Psychological empowerment programs have also been shown todecrease stress, anxiety, and depression in adolescents with hemophilia [97]. This providesadditional support to the importance of empowerment interventions and their impact onthe wellbeing of this population.The studies included in our review were nearly evenly distributed between quantita-tive and qualitative study designs, representing a diverse range of data collection. The mostcommonly used quantitative tool was the ARC-SDS, which is not surprising given thatmany studies represented individuals with ID or neurobehavioral disorders, where thistool has been frequently used [93]. The GYPES was also commonly used and has been es-tablished as a validated tool used to measure empowerment in young people [98]. This toolconsists of five domains: knowledge and understanding, personal control, identity, decisionmaking, and enabling others. The GYPES has been validated using confirmatory factoranalysis and is appropriate in evaluating empowerment in individuals with any chroniccondition [98]. Future research aiming to evaluate empowerment in adolescents with anychronic condition may consider using this scale to better understand empowerment levelsacross individuals with varying conditions.Interviews and focus groups were conducted in both qualitative and mixed-methodstudies and were able to provide several emerging empowerment-related themes. It iscritical that research within the adolescent population continue to qualitatively access thelived experiences of those with disabilities/chronic conditions, as the information collectedin interviews and focus groups offers additional context to quantitative data. Effectivemethods and barriers in qualitative research of children/adolescents have been reviewedand interview techniques such as building appropriate rapport have been suggested inChildren 2025, 12, 49 16 of 21the literature [99]. One study in our review conducted interviews as well as allowingparticipants to complete journal entries to share their feelings about living with chronickidney disease [71]. Journal entries have been used in other studies as starting pointsalongside interviews in younger adolescents (under 14 years old) with spina bifida wherechildren were given the opportunity to create a unique journal about their experiences [100].This suggests an important tool which future studies aiming to understand the livedexperiences of adolescents could consider in addition to the use of interviews and focusgroups. This may be especially beneficial in younger adolescents, providing them a placeto begin expressing their feelings.5.1. LimitationsOur review was limited to studies published in English and accessible through UBClibrary, resulting in the potential for low representation of areas where English is not theprimary language and exclusion of studies not available to the authors through the librarydatabase. More than half of the studies did not include detailed demographic informationabout their participants (i.e., ethnicity/ancestry and socioeconomic status). This missinginformation must be considered when interpreting our demographic findings.Some studies evaluating interventions lacked control groups, and other studies pro-vided very low sample sizes (n < 4). Findings generated from these studies must be carefullyinterpreted. Additionally, the term ‘empowerment’ was defined differently by various stud-ies in this review. Although there were many overlapping themes, it must be consideredthat studies may have been measuring different domains of the term ‘empowerment’.5.2. ConclusionsThis scoping review identified a gap in the consideration of ethnicity/ancestry andsocioeconomic status in adolescents with a chronic condition/disability in studies evalu-ating empowerment. We also identified a gap in the inclusion of younger adolescents inthis research space and suggest that future research should aim to capture the experiencesof a broad range of adolescent ages. Additionally, several interventions were observedto have positive outcomes on empowerment levels in adolescents with a chronic condi-tion/disability. Evaluating these interventions specifically in cohorts underrepresented inthis scoping review (i.e., in countries outside of the US, lower-socioeconomic-status groups,ethnic minority groups, and younger adolescents) is needed to fully capture their outcomesand broader applications.We suggest that future research focus on understanding the intersection of disability,ethnicity, and socioeconomic status in adolescents with a chronic condition/disability andhow best to implement interventions used to increase empowerment in various demo-graphic settings.Supplementary Materials: The following supporting information can be downloaded at: https://www.mdpi.com/article/10.3390/children12010049/s1, Table S1A: Search Strategy; Table S1B: DataExtraction; Table S2A: Summary of Original Articles; Table S2B: Summary of Review Articles.Author Contributions: K.A.: Conceptualization, Methodology, Formal analysis, Investigation,Writing—Original Draft, Visualization. C.P.: Conceptualization, Formal analysis, Visualization,Writing—Review & Editing. C.J.D.R.: Conceptualization, Writing—Review and Editing, Supervi-sion. K.A.S.: Conceptualization, Writing—Review Editing, Supervision. A.V.: Conceptualization,Writing—Review and Editing, Supervision. V.K.: Methodology, Validation, Resources,Writing—Review and Editing. A.M.E.: Conceptualization, Resources, Writing—Review and Editing,Supervision, Project administration, Funding acquisition. All authors have read and agreed to thepublished version of the manuscript.Children 2025, 12, 49 17 of 21Funding: This research received no external funding.Acknowledgments: K.A. is the recipient of a Canada Graduate Scholarship—Master’s program award.Conflicts of Interest: The authors declare no conflict of interest.References1. Branje, S. Adolescent identity development in context. Curr. Opin. Psychol. 2022, 45, 101286. [CrossRef] [PubMed]2. 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Empowerment in Adolescent Patients with a Disability/Chronic Condition: A Scoping Review
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