Barriers and facilitators of chronic illness self-management among adolescents: a review and future directions

Authors

  • Sally Lindsay PhD,

  • Shauna Kingsnorth PhD,

  • Yani Hamdani BSc, MA


Sally Lindsay
Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital
Dalla Lana School of Public Health, University of Toronto
150 Kilgour Road, Toronto, ON, Canada M4G 1R8
Telephone: +416 425 6220 (ext 3654)
E-mail: slindsay@hollandbloorview.ca

Abstract

lindsay S, kingsnorth s & hamdani y (2011) Journal of Nursing and Healthcare of Chronic Illness3, 186–208
Barriers and facilitators of chronic illness self-management among adolescents: a review and future directions

Aim.  To synthesise findings from empirical studies examining factors that influence adolescents’ self-management of chronic illness and to make recommendations for clinical practice.

Background.  Given the extent of chronic illness among youth where 1 in 10 adolescents have activity limitations due to chronic illness or disability, the consequences for health care systems and the burden on patients is significant. Understanding the experiences of adolescents is critical because this group undergoes a developmental period of significant physical, emotional and social changes accompanied by a transition from paediatric to adult health services. Most self-management research focuses on adults or children without recognising the importance and impact of these developmental changes, tending to focus on parents’ and health care providers’ perspectives. Little is known about adolescents’ perspectives of self-managing chronic illness.

Method.  Integrative review of the literature.

Results.  A qualitative examination of the main findings from the 34 studies identified in the review revealed a consistent pattern of key themes that hindered or facilitated chronic illness self-management. Themes regarding barriers to adolescents’ illness management included: socio-demographic characteristics, medication adherence, psychosocial barriers and parental involvement. Themes associated with facilitating self-management among adolescents included: psychosocial factors, knowledge about illness, effective coping styles and shared management with parents.

Conclusions.  Understanding the factors that facilitate and hinder the self-management of chronic illness among adolescents is critical to improving interventions and health outcomes for youth.

Relevance to clinical practice.  The recommendations based on this review encourage clinicians to assess the self-management skills and social contexts of adolescents with chronic conditions to support the range of condition related self-care and life skills needed for optimal health and successful transition to adulthood.

Introduction

The increased prevalence of chronic illness coupled with reduced fatality rates for childhood conditions has dramatically changed the face of chronic illness for young people (Perrin et al. 2007) where approximately 1 in 5 adolescents have special health care needs and 1 in 10 have activity limitations due to chronic illness or disability (Sawyer et al. 2007a). Given this extent, the consequences for health care systems and the burden on patients are significant (Sawyer et al. 2007a). With the rise of self-care initiatives, health professionals are increasingly realising that the management of chronic conditions is not in the direct control of health professionals but rather, increasingly in the hands of patients (Lindsay & Vrijhoef 2009).

Currently, chronically ill youth and their parents co-ordinate most of their health care themselves. Although several chronic care models and self-management strategies have been incorporated into health services, most do not address the specific needs of youth (Miller et al. 2004). This is problematic because failure to make a smooth transition toward independent self-care can influence health outcomes (Dashiff et al. 2008; Kingsnorth et al. 2010). Effective self-management is vital because it can reduce health care costs, improve mortality and secondary morbidity rates, and enhance self-efficacy, quality of life and transition from paediatric to adult services (Peter et al. 2007, Sawyer et al. 2007b).

Although adolescents need to become more engaged in self-care, little is known about the adolescent perspective of how they self-manage chronic illness. Furthermore, most self-management interventions are designed for adults (Lorig et al. 1999, Lindsay 2010c). When self-management by children and youth is explored, the focus is often on parents’ or health care providers’ perspectives (Barlow & Ellard 2004, Okumura et al. 2010). Exploring adolescence is critical because of the significant physical, emotional and social changes involved in the developmental transition to adult roles (Magill-Evans et al. 2001). This period may be more complicated for chronically ill youth because they are at greater risk of low self-esteem and often encounter more difficulties negotiating the tasks of adolescence than their healthy peers (Magill-Evans et al. 2001, Lindsay 2010a). It is essential for youth with chronic health conditions to develop self-management skills to combat vulnerability, achieve self-sufficiency and successfully transition to adult health care services (Sawin et al. 2009). Thus, understanding youth’s own perceptions is critical for self-management and will support more effectively targeted interventions to improve health outcomes.

Aim

The aim of this integrative review was to synthesise findings from empirical studies about the factors that influence how adolescents self-manage chronic illness and to make recommendations for clinical practice.

The objectives of this review are: (1) to identify literature focusing on the self-management of adolescents with chronic illness, (2) to explore key themes, (3) to identify theoretical and methodological gaps in this literature and (4) to make recommendations for future research and clinical practice.

Methods

An integrative review was performed to obtain a comprehensive portrayal of adolescents’ perspectives of self-managing chronic illness. This method of literature review allows for the inclusion of diverse methodologies (i.e., experimental and non-experimental) and evidence (i.e., qualitative and quantitative) (Cooper 1998). Methodological strategies outlined by Whittemore and Knafl (2005) were employed to enhance rigour.

Search strategy

A series of electronic searches were conducted using major health-related databases (CINAHL, MEDLINE, PubMED, Web of Science, EBSCOHost and Google Scholar). The search strategy used broad terms such as self-management, self-care, chronic illness, chronic disease, disability, youth, adolescent, transition and shared management. Specific illness terms used were arthritis, asthma, diabetes, cerebral palsy, spina bifida and epilepsy. The ‘similar article’ function and manual cross-referencing from identified studies were used to enhance the search. Through this process, 707 articles were identified; after removing duplicates and applying the inclusion criteria, 34 articles remained.

Inclusion strategy

Studies were included in the review if they met the following criteria: (1) peer-reviewed article published between January 2000–August 2010; (2) written in the English language; (3) included a sample of adolescent youth between 12–20 years of age managing a chronic condition (studies were included if the sample primarily encompassed these ages, the mean age of the sample fell within this age range, or the sample was identified as ‘adolescents’ without further specificity); (4) emphasised youth perspectives (i.e., not parents or health care providers) and (5) contained empirical data (i.e., not review or opinion papers).

Selection strategy

Two people reviewed the titles of papers identified in the electronic searches; abstracts of selected papers were obtained and reviewed and full copies of selected papers that met the inclusion criteria underwent a detailed review. Each paper meeting the inclusion criteria was read in its entirety before summarising the key attributes. The first author kept a journal of decisions as part of an audit trail to ensure the study’s confirmability. Journal entries were used to formulate discussion points for meetings between the authors.

Analysis

Data were extracted from each article on sample characteristics, health condition, study design, objective and key findings (especially barriers and facilitators of self-management). Articles were summarised and coded by the first author and a research assistant and then checked by the second author. A list of all the key themes was developed. A constant comparison method was used to facilitate the distinction of patterns, themes, variations and relationships (Glaser 1978, Patton 2002). Data elements were compared and critiqued; consistencies and findings were summarised and evaluated. After the initial analysis was complete, all authors reviewed the key themes identified, and minor adjustments were made until consensus was reached. This integrative review method is compatible with the use of varied data from diverse methodologies (Whittemore & Knafl 2005).

Results

A total of 34 studies were included in the review. Table 1 provides an overview of study characteristics including sample, purpose, design, findings, facilitators and barriers. The majority of the studies (79%) were conducted in the US with the remainder conducted in the UK (15%), Canada (3%) and the Netherlands (3%). Chronic illnesses examined included: diabetes (40%), asthma (30%), spina bifida (9%), Marfan syndrome (6%), inflammatory bowel disease (3%), renal disease (3%), juvenile arthritis (3%) and various other illnesses (6%). Most studies used qualitative methods (47%), mainly in-depth interviews and focus groups, followed by quantitative methods (41%), mostly questionnaires and mixed methods (12%). Sample sizes ranged from 7–288. Definitions of ‘adolescent’ varied and thus, ages of participants ranged from 7–22.

Table 1.   An overview of study characteristics and findings from eligible studies
Author, year (country)N (female, %)Age (range or mean)Socio-demographicsHealth conditionStudy designTheoryObjectiveKey findingsFacilitatorsBarriers
  1. SM, shared management.

Amer 2008 (USA) 31 (39)8 to 1573% had incomes >$40 000Type 1 diabetesSecondary data analysisSocial ecologyTo examine children’s adaptation to Type 1 diabetesMost children positively adapted to disease; control of the disease was not linked with self-worthA positive attitude toward illness preserves adaptationChildren who have a negative attitude toward illness may view it as an intrusion impacting their self-worth
Ayala et al. 2006 (USA) 50 (56)11 to 1448% African–American, 40% WhiteAsthmaFocus groupsSocial ecologyTo identify developmental issues that affect asthma managementRelative to elementary school, transition to middle school poses a challenge to managing asthmaDesire for greater autonomy & independence in self-care was strongMiddle school has more demanding physical education, more peer pressure, less supportive network & involves multiple teachers
Bellin et al. 2007 (USA) 31 (100)12 to 2197% WhiteSpina bifidaInterviewsEcological model of adaptation in spina bifida and the theory of inner strength in womenTo explore experience of self-concept & family relationships while growing up with spina bifidaPositive self-concept despite multiple stressors; range of protective coping mechanisms identifiedStrong relationships with parents although tension related to achieving independence as wellFeelings of embarrassment, teasing, bullying, anger & frustration
Buston & Wood 2000 (UK) 49 (59)14 to 20None providedAsthmaInterviewsN/ATo explore young people’s feelings about their illness & elicit detailed information regarding their illness-related behaviours, including SMMany know the importance of SM but admit they don’t always do itBelief that taking medication as prescribed is extremely importantNon-compliance was attributed to forgetfulness, belief that the medication is ineffective, denial of condition, difficulty using inhalers, inconvenience, fear of side effects, embarrassment & laziness
Callery et al. 2003 (UK) 25 (36)9 to 16Urban and deprived communityAsthmaInterviewsN/ATo assess health beliefs, perspectives & concerns of young people & their carersYouth emphasised the impact of asthma on everyday life; carers & youth had different reports of symptoms ‘Good’ vs. ‘bad’ days determined by how visible asthma was to others; appearing different to peers played a significant role
Cohen et al. 2003 (USA)160 (63)15·768% Hispanic, 26% African–American; majority low incomeAsthmaQuestionnaireN/ATo examine perceptions & attitudes towards self-treatmentAnxiety, fear & embarrassment related to asthmaFeelings of control associated with positive attitudes & active SMEmbarrassment (many do not tell friends) associated with negative attitudes
Dashiff 2003 (USA) 31 (42)12 to 1570% White; majority of families middle classDiabetesQuestionnaireDependent Care (Orem)To examine division of diabetes self- & dependent-care responsibility among youth & their parentsParents & youth had different perceptions of diabetes responsibility Most adolescents had not achieved the recommended level of metabolic control
Dashiff et al. 2009 (USA)131 (30)11 to 1582% WhiteDiabetesInterviews & questionnaireAttachment TheoryTo test a model of the influence of developmental conflict, maternal separation anxiety, maternal inhibition of autonomy & relatedness on cognitive autonomy & self-careMaternal separation anxiety predicted cognitive autonomy (linked to self- care)  
Giarelli et al. 2008a (USA) 37 (48)14 to 2189% White; 74% middle class; various rural/urban communitiesMarfan syndromeInterviews & surveysSelf Surveillance and Symbolic InteractionismTo explain the socially complex process of ‘transition to SM’The transition to SM is influenced by the core psychological problem of ‘becoming fit and fitting in’ accompanied by shifts in 5 psychosocial processes: perception, orientation, ownership, reasoning and sphereSuccessful transition was attributed to realistic expectations, accurate knowledge, acceptance and a reconciliation of one’s condition with personal goalsNo absolute age or stage for SM competency; acquisition is an incremental and lifelong process
Giarelli et al. 2008b (USA) 37 (48)14 to 2189% White; 74% middle class; rural/urban and suburbanMarfan syndromeSecondary data analysis of InterviewsLerner’s Developmental ContextualismTo examine systematic factors that influence ‘transition to SM’Belief in the diagnosis; wanting to understand the cause & effect of the disease & willing to share responsibility for problem solving; self-care involves gradual changes in knowledge, attitudes, & behaviour influenced by parents, peers, & health care providersSpecify acceptable & unacceptable activities; discuss when to act on symptoms, future needs, & career choices, & engage child in decision- making process; parents’ willingness to relinquish control is important; knowledge is a bridge to SMParents’ fears & the need to stay involved in the child’s health care; parents not relinquishing control
Hanna & Guthrie 2001 (USA) 16 (56)11 to 1894% White; most middle class; rural and urbanType 1 diabetesInterviewsSocial Support and Social Network TheoryTo identify perceptions of helpful & non-helpful support specific to adolescent responsibility for diabetes managementHelpfulness of directed guidance & tangible assistance depends on degree of directness & perceived need for helpAdolescents reported that helpful behaviour included parents giving tangible assistanceAdolescents reported few non-helpful behaviours; directive guidance was identified as not always required or desired
Herrman 2006 (USA) 17 (59)8 to 15None providedType 1 diabetesInterviewsSocial Exchange TheoryTo explore beliefs about the costs & rewards of diabetes & its treatmentDealing with stressors is enhanced by having a good support systemRewards included personal control & self-careCosts include dietary restrictions, constant interruptions, thinking & counting, & worrying about what can happen
Ingerski et al. 2010 (USA) 74 (42)13 to 17Predominantly White and middle classInflammatory bowel diseaseQuestionnaire & various measuresN/ATo examine family-reported adherence- related barriers for the adolescent, & examine their relationships to a prescribed medication regimeNeither demographic nor disease severity variables were related to the total number of reported barriersEffective problem solvingForgetting, being away from home, & interference with an activity (medication adherence)
Jedeloo et al. 2010 (the Netherlands) 31 (48)12 to 19None providedVarious chronic conditionsQ-methodology & interviewsN/ATo uncover preferences for SM & hospital careIdentified 4 pro-files for SM: ‘conscious & compliant’, ‘backseat patient’, ‘self- confident & autonomous’, & ‘worried & insecure’Most adolescents view themselves as normal; adolescents value the opportunity to be involved in health care decisionsNot all adolescents share common ideas about their condition & treatment; thus a one size fits all approach is not viable
Laster et al. 2009 (USA) 28 (67)13 to 1792% African–American, 78% on Medicaid; urbanAsthmaFocus groupN/ATo identify & describe potential barriers to effective asthma managementBarriers to environmental control were attributed to financial constraints; findings indicate that families in urban low income communities require interventions tailored to their needsParents inappropriately delegated asthma SM to children too young, too poorly trained, &/or too unmotivatedCaregiver & in child health beliefs were a significant barrier to asthma care & SM at home & school; psychological distress was prevalent
Law et al. 2002 (UK) 30 (47)13 to 19100% WhiteType 1 diabetesQuestionnaireN/ATo explore relation among illness beliefs, SM behaviours, psychological well-being, & blood-glucose controlIllness beliefs were not related to SM behaviours, but both were important contributors to psychological well-being  
Lipton et al. 2003 (USA)2881668% African–American, 28% Hispanic; 59% on Medicaid; urbanDiabetesInterviewsN/ATo document social factors, SM, & the effect of the diseaseAdolescents reported that disease negatively affected their personal lives (e.g., excluded from sports) Difficulty obtaining insurance; negative effects of diabetes appear to increase in young adulthood
Mulvaney et al. 2008 (USA) 24 (62)13 to 1971% African–American, 21% White, 4% Hispanic; 59% on MedicaidType 2 diabetesFocus groupN/ATo document adolescent perceptions of barriers & facilitators to SMIdentified 4 mains influencing SM: adolescent psychosocial development; role of others with diabetes; environmental influences & adolescents’ problem-solving/coping skills Barriers related to social situations (embarrassment, seeking acceptance or normality, balancing competing interests) were common
Munzenberger et al. 2010 (USA)104 (46)7 to 17Majority from White, middle-class homes; urbanAsthmaQuestionnaire To explore relation between child, caregiver, family & asthma characteristics & SM responsibilityChildren & caregivers perceive differently the responsibility for asthma management tasksPatient age was the best predictor of both patient & caregiver responsibilityDescriptions of problem solving and coping were limited (reframing)
Naar-King et al. 2006 (USA) 96 (46)10 to 1663% African–American; 49% low income; urbanType 1 diabetesQuestionnaireSocial Ecological ModelTo test a social ecological model of illness management that simultaneously assesses multiple contributors among high-risk youthInternalising symptoms & peer relationships were not significantly related Higher externalising symptoms, poorer family relationships, lower satisfaction with providers, & greater age contributed to variability in illness management
Rhee et al. 2009 (USA)126 (60)13 to 21Diverse ethnic groups and SES; urban/suburbanAsthmaSurveyHealth Belief ModelTo explore perceived barriers to SM & associations between these barriers & psychosocial factorsPsychosocial factors accounted for 32% of the variance in barriers (negativity towards providers, medication regimen, cognitive difficulty, peer/family influence & denial)Self-efficacy linked with reduced barriersUnwillingness to follow doctor’s orders, remembering to take care of asthma & trying to forget they have asthma were identified; males reported more barriers
Roux et al. 2007 (USA) 31 (100)12 to 2197% WhiteSpina bifidaInterviewsEcological Model of Adaptation in Spina Bifida and the Theory of Inner Strength in WomenTo explore the experience of peer relationships as part of a larger exploration of adaptation to spina bifidaNormalisation, challenges in peer connectedness; prejudice, stereotypes & limited dating  
Sartain et al. 2000 (UK)  7 (71)8 to 14None providedVarious chronic illnessInterviewsN/ATo explore children’s, parents’, & health professionals’ experiences of childhood chronic illnessChildren’s perspectives of chronic illness are more linked with health service experiences than with a developmental stageChildren with chronic illness are not a homogenous group; they are capable of understanding their illness & must be listened to 
Sawin et al. 2003 (USA) 66 (58)12 to 21UrbanSpina bifidaInterviews & questionnaireN/ATo examine the relationships between adaptation outcomes & spina bifida condition-specific, adolescent protective factors, & family protective factorsSpina bifida condition specific variables & adolescent activities (decision-making, household responsibilities) were related to functional status, SM & social competence  
Sawin et al. 2009 (USA) 31 (100)15·8497% WhiteSpina bifidaInterviewsEcological Model of Adaptation; Independent Living Model; International Classification of Functioning, Disability, and HealthTo describe the experience of SM in woman with spina bifidaSM skills are not prominent in everyday life; shared decision-making is hampered by a lack of understanding of the roles & responsibilities toward SMOpportunities to engage in SM activitiesConfronting discrimination & stigma; parental impact on SM (overprotection); vulnerabilities & barriers (independence)
Schilling et al. 2006 (USA) 22 (59)8 to 1995% WhiteDiabetesInterviewsSelf-management (parent-dominant; transitional and adolescent dominant)To examine nature of sharing SM responsibilities among adolescents & parents, & patterns of SM across adolescent developmental stagesEarly adolescents (11 to 15 y) performed much of their own self-care while parents actively participated; in mid-adolescence most youth managed their diabetes careYouth assume more responsibility for self-care as they age; there is greater variability in SM at mid-adolescence than in other developmental stagesParent conflict over food & blood glucose testing (early adolescence); exercise was a conflict with parents
Schneider et al. 2007 (USA)156 (55)10 to 1681% White; urbanDiabetesQuestionnaireN/ATo identify & evaluate an empirically derived classification system of distinct management styles3 SM styles emerged: ‘methodical style’, ‘adaptive style’ & ‘inadequate style’  
Sin et al. 2005 (USA) 53 (45)15 to 17100% African–American; majority low income; urbanQuestionnaire AsthmaN/A To examine the relationships between asthma knowledge, SM, & social supportAsthma knowledge & social support had a significant positive relation to SM  
Snethen et al. 2001 (USA) 35 (43)13 to 1866% White, 29% African–American, 3% HispanicEnd stage renal diseaseQ-methodologyN/ATo explore perceptions of living with chronic illness & the effects on development & well-being4 main themes: normalisation, illness intrusion, barrier to normalcy, andillness management (parent-focused vs. self-focused)  
Stinson et al. 2008 (Canada) 36 (66)12 to 2066% ruralJuvenile idiopathic arthritisInterviews and focus groupsN/ATo explore adolescent SM needs & the acceptability of a web-based program of SM aimed at improving quality of lifeAdolescents need to ‘let go’ from others who have managed their illness & gain controlGaining knowledge & skills; experiencing understanding through social support 
Storch et al. 2006 (USA)167 (64)8 to 1780% White; most middle incomeVarious measuresType 1 diabetesN/A Bullying has a negative effect on SM
To determine associations among diabetes-related bullying, SM, metabolic control & depression
 As a function of bullying, adolescents may avoid observable SM tasks (e.g., glucose testing & dietary tasks); depression partially mediates the relationship between bullying & SM 
Van Pelt et al. 2006 (USA) 42 (69)18 to 2285% WhiteAsthmaQuestionnaireN/ATo determine whether self-focused attention mediates the relationship between illness uncertainty & psychological distressAdolescents with asthma tend to engage in private self-focus compared to age & gender matched peers without chronic illnessSelf-focused attention mediated the relationship between perceived illness uncertainty & psychological distress 
Vesco et al. 2010 (USA)261 (46)13 to 1887% WhiteQuestionnaire & health recordsType 1 diabetesN/ATo analyze associations between factor scores for caregiver responsibility for direct & indirect diabetes management tasks with glycemic control & blood glucose monitoring frequencyCaregiver responsibility should be sustained as teens grow olderPerceived greater caregiver responsibility contributed to better adolescent diabetes management  
Williams 2000 (UK) 20 (0)15 to 1875% WhiteDiabetes and asthmaInterviewsCharmaz’s Concept of ‘alert assistant’ and Social Construction of Self-careTo explore how young people with a chronic illness & their carers negotiated responsibility for self-careMothers’ perceptions of the self-care abilities of their sons & the gendered ways boys lived with chronic illness influenced how mothers cared for their youth Most males managed diabetes & asthma in ways to minimise potential stigma attached to the illness

Only 14 studies were based on a theoretical framework including the social ecology approach, the ecological model of adaptation and other diverse psychosocial and health related models. There was roughly equal representation of males and females in most studies; four studies had a specific gender focus (three on adolescent women with spina bifida and one on masculinity and chronic illness). In terms of ethno-cultural status, 50% of the studies had a white majority sample, 18% with a mixed sample, 9% focused on specific groups while the remainder of 23% of the studies did not specify the ethno-cultural composition of the sample. The majority of the studies did not specify the socio-economic status of the sample (56%), while the remainder had participants predominately from middle-class (22%) or from low income families (21%). Most of the studies (65%) did not specify a geographic location for participant recruitment. Of those that did, most focused on urban samples (20%), a few on mixed rural/urban samples (12%) and one article with a predominantly rural sample.

Key themes regarding barriers to adolescents managing chronic illness included: socio-demographic characteristics, medication adherence, psychosocial barriers and parental involvement in the transition toward shared management.

Socio-demographic characteristics

Four studies (Callery et al. 2003, Mulvaney et al. 2008, Laster et al. 2009, Rhee et al. 2009) noted how socio-demographic factors hindered the management of chronic illness among adolescents. For example, Amer (2008) found that demographic factors including age, gender and socio-economic status explained 15% of the variance in adolescent attitude towards illness. Financial constraints were noted as a key barrier to environmental control among youth with asthma (Laster et al. 2009). Young women with spina bifida also described the financial consequences of their condition (Bellin et al. 2007).

Seven studies focused on specific ethno-cultural groups of youth (Cohen et al. 2003, Lipton et al. 2003, Sin et al. 2005, Ayala et al. 2006, Naar-King et al. 2006, Mulvaney et al. 2008, Laster et al. 2009). Lipton et al. (2003) found that Black and Hispanic adolescents with diabetes reported that their illness negatively affected their family life, excluded them from sports activities and made it difficult to get health insurance. Meanwhile, Rhee et al. (2009) found that cognitive barriers (such as remembering treatment regimens) were more common for non-White adolescents and those with a disadvantaged socio-economic status. This could be a result of such youth experiencing more adverse life situations – influencing their priorities for self-management (Rhee et al. 2009).

The findings in relation to the influence of age on self-management were mixed. Some studies found that age was negatively linked with illness management where older adolescents were at risk for poor self-care (Naar-King et al. 2006, Giarelli et al. 2008a). For example, Giarelli et al. (2008a) found that problem solving was hindered by mixed messages about responsibility for management from parents that occurred more often when the child was diagnosed during adolescence rather than early childhood. Meanwhile, others report that youth assume more self-management as they age. Munzenberger et al. (2010) found that patient age was the best predictor of self-management among youth with asthma. Another study (Schilling et al. 2006) noted, however, that there is a greater variability in self-management at mid-adolescence than in other developmental stages. On the other hand, Sartain et al. (2000) found that youth’s illness perceptions are more linked with personal experience than developmental stage. Such discrepancies between studies may be a result of the different illnesses examined or the methods employed between studies.

Only one study reported a finding in relation to geographic location whereby youth in urban, low-income communities required asthma interventions tailored to their specific characteristics, barriers and challenges (Laster et al. 2009). Of the studies that mentioned location, they tended to focus on urban samples.

Three studies explored the role of gender in self-management (Williams 2000, Rhee et al. 2009, Sawin et al. 2009). Rhee et al. (2009) found that males consistently reported more barriers (of negativity, social influence and denial) than females; yet these gender differences were not explained by psychosocial or socio-demographic factors. In a similar study focusing exclusively on males with diabetes and asthma, Williams (2000) found that young males looked for ways to minimise the potential stigma attached to their illness. Further, mothers’ perceptions of their son’s self-care abilities influenced how mothers shared self-management tasks. Meanwhile, Sawin et al. (2009) found that self-management skills were not prominent in the everyday lives of adolescent females with spina bifida. Instead, these skills were something that these young women assumed they would grow into. It was unclear, however, whether it was age or gender that contributed to this finding.

Medication adherence

Adherence to treatment regimens was a prominent barrier in most of the studies under examination. Numerous reasons for medication non-compliance were cited including: cost, dislike of taste, forgetfulness, belief that the medication was ineffective, denial about the condition, complicated or difficult to use, inconvenience, interference with an activity, fear of side effects, embarrassment, laziness and negativity toward health care providers (Buston & Wood 2000, Ayala et al. 2006, Mulvaney et al. 2008, Laster et al. 2009, Rhee et al. 2009, Ingerski et al. 2010).

Youth noted the extensive limitations of having diabetes on their social lives and the need for ongoing ‘thinking and counting’ related to dietary restrictions, injections, blood glucose monitoring, exercise, and dealing with stress. These ‘constant interruptions’ (e.g., checking blood sugar, carrying equipment, and developing a rigid routine) were key barriers to their self-management (Herrman 2006).

Psychosocial barriers

Twelve of the studies found that psychosocial barriers hindered youth from effectively managing their chronic conditions (Callery et al. 2003, Cohen et al. 2003, Ayala et al. 2006, Herrman 2006, Storch et al. 2006, Bellin et al. 2007, Roux et al. 2007, Amer 2008, Mulvaney et al. 2008, Laster et al. 2009, Rhee et al. 2009, Sawin et al. 2009). Rhee et al. (2009) found that psychosocial factors were strong predictors of barriers to self-management and accounted for 32% of the variance in barriers to self-care (e.g., negativity towards providers, medication regimen, cognitive difficulty, peer/family influence and denial). Further, youth who have a negative attitude toward illness may view the disease as an intrusion impacting their daily life (Amer 2008) and may leave them more susceptible to neglecting treatment regimens (Rhee et al. 2009).

Adolescents reported having persistent unpleasant interactions with peers (Storch et al. 2006, Bellin et al. 2007). For example, youth described that managing asthma was time consuming and annoying (Ayala et al. 2006). The social aspects of managing diabetes seemed to particularly influence attitudes and self-management (Mulvaney et al. 2008). Many adolescents were embarrassed about their conditions (Cohen et al. 2003), were concerned about appearing different to their peers and worried about teasing (Callery et al. 2003, Ayala et al. 2006, Herrman 2006, Bellin et al. 2007, Mulvaney et al. 2008), discrimination, and stigma (Roux et al. 2007, Sawin et al. 2009). Indeed, bullying can have a negative effect on self-management of chronic illness among youth. Storch et al. (2006) found that diabetes-related bullying was positively linked with glycated haemoglobin (HbA1c) concentration and negatively related to overall self-management and adherence to glucose testing and dietary tasks. Depression related to bullying may also contribute to lower adherence to glucose monitoring, exercise, diet and medication requirements (Storch et al. 2006).

Many barriers to self-management were also encountered at school such as inappropriate food in the cafeteria (Mulvaney et al. 2008). School-related stress and teasing related to appearing different to others were key issues among many of the youth in these studies (Bellin et al. 2007). Teachers were also a source of stress as they would often accuse youth of faking asthma attacks (Ayala et al. 2006), excluded them from sports (Lipton et al. 2003) and were often not understanding or knowledgeable of chronic conditions (Mulvaney et al. 2008). Given the burden associated with managing a chronic illness, psychological distress was prevalent among adolescents (Laster et al. 2009).

Parental involvement in the transition toward shared management

The level of parental involvement in adolescents’ self-management was a key source of stress and conflict in most of the studies under examination. Parents and adolescents often differed in their assessments of function, behaviour and quality of life (Dashiff 2003, Jedeloo et al. 2010, Munzenberger et al. 2010). More specifically, adolescents’ attitudes toward independence, self-management and treatment adherence often differed from their parents (Jedeloo et al. 2010). For example, Dashiff (2003) found that youth perceived that they had less responsibility for their self-care than their parents. Findings indicate that youth are sometimes willing to take responsibility and often hover between individual actions and support of others resulting in unclear responsibility for their self-care (Karlsson 2008). Not surprisingly, tensions arose between parents’ supervisory roles and adolescents’ self-care roles, which were often met with anger and frustration, anxiety and mistrust by youth (Williams 2000, Sawyer & Aroni 2005, Ayala et al. 2006). Tensions may have stemmed from a divergence of priorities and responsibilities between parents and young adults (Sartain et al. 2000, Williams 2000) along with a lack of appreciation of the parent’s role (Jedeloo et al. 2010) that are exacerbated by the presence of chronic illness. Adolescents also described several parental behaviours that were unhelpful including nagging, embarrassing them by talking about their illness to others, not understanding food cravings, and not listening to them (Mulvaney et al. 2008).

Some parents were reluctant to give adolescents autonomy for the management of their illness because they were worried it would burden or stigmatize them (Giarelli et al. 2008a), or lead to parent–adolescent conflict (Dashiff et al. 2009, Sawin et al. 2009). For example, Hanna and Guthrie (2003) found that misguided helping can be detrimental to parent–adolescent relationships and adolescents’ development of competence, and ultimately affect self-management. Some parents inappropriately delegated asthma self-management at a young age, when their children were either poorly trained or unmotivated to assume care of their condition (Laster et al. 2009). Parents’ fears and the need to stay involved in their child’s health also hindered youth’s uptake of self-management responsibilities (Giarelli et al. 2008b). Poor timing and/or lack of recognition of their child’s self-management readiness to transfer the responsibility of care were frequently noted in the studies reviewed.

Facilitators of self-management among adolescents

Examination of the key findings from the 34 studies revealed a consistent pattern of factors that facilitate self-management among adolescents. Themes included: psychosocial facilitators, knowledge about illness, coping and self-management styles, and parental involvement in transition toward shared management.

Psychosocial facilitators

Twelve of the studies indicated that psychosocial factors can have a positive influence on self-managing health for adolescents (Sawin et al. 2003, 2009, Sin et al. 2005, Herrman 2006; Van Pelt et al. 2006, Bellin et al. 2007, Amer 2008, Giarelli et al. 2008a,b, Mulvaney et al. 2008, Laster et al. 2009, Rhee et al. 2009, Jedeloo et al. 2010). For instance, Rhee et al. (2009) found that self-efficacy is linked with reducing barriers to self-managing illness among youth. Amer (2008) similarly reported that a positive attitude toward illness preserves adaptation to living with the condition.

Indeed, most adolescents with a chronic illness tried to view themselves as ‘normal’ (Jedeloo et al. 2010). Among youth with spina bifida, condition specific variables and adolescent activities (e.g., decision-making, household responsibilities) were related to functional status and self-management (Sawin et al. 2003). Meanwhile, self-focused attention mediated the relationship between perceived illness uncertainty and psychological distress. For instance, adolescents with asthma had an increased tendency to focus on their inner thoughts and feelings as the subject of their attention compared to peers. However, while a heightened internal focus can facilitate self-management, it can also lead to greater psychological distress due to the unpredictable nature of the illness (Van Pelt et al. 2006).

Giarelli et al. (2008a) found that an adolescent’s problem of fitting in with peers was resolved through concurrent psychosocial processes: ‘shifting perception’ (e.g., emerging self-awareness and understanding of illness), ‘shifting orientation’ (i.e., the psychosocial processes where youth change their thinking more towards the future) and ‘shifting ownership’ (e.g., the psychosocial processes of taking on self-responsibility and relieving another of the responsibility for maintaining health).

Social support was consistently linked with improved self-management skills among adolescents (Herrman 2006, Bellin et al. 2007, Mulvaney et al. 2008). For example, Laster et al. (2009) found that social support had a positive influence on health. Another study found that it was helpful having relatives who also had the same condition because they had someone they could relate to and receive encouragement (Mulvaney et al. 2008). Peer support was also important for effective self-management among youth with spina bifida (Sawin et al. 2009), diabetes (Mulvaney et al. 2008) and asthma (Sin et al. 2005).

Knowledge about illness

Health education provides knowledge and practical skills that often translates action into lifestyle. Six studies described how adolescents needed knowledge and education about their condition to manage it effectively (Law et al. 2002, Sin et al. 2005, Herrman 2006, Giarelli et al. 2008b, Stinson et al. 2008, Sawin et al. 2009). Some youth felt that gaining specialised knowledge and skills would help them to take ownership for their condition (Giarelli et al. 2008b, Sawin et al. 2009). For example, youth with Marfan syndrome wanted to understand the cause and effect of their condition and to share responsibility in problem solving (Giarelli et al. 2008b). Knowledge about the health condition had a positive influence on the self-management of asthma (Sin et al. 2005), diabetes (Herrman 2006) and juvenile arthritis (Stinson et al. 2008). In contrast, Law et al. (2002) found that knowledge did not significantly impact self-management among diabetic adolescents but did influence overall well-being.

Coping and self-management styles

Nine of the studies described the coping mechanisms and self-management styles that adolescents used to manage their illness (Snethen et al. 2001, Ayala et al. 2006, Herrman 2006, Van Pelt et al. 2006, Bellin et al. 2007, Sawyer et al. 2007a,b, Schneider et al. 2007, Giarelli et al. 2008a, Jedeloo et al. 2010). Although each study described coping in a slightly different way many of the themes were similar and centred on normalisation (i.e., individuals who were independent and leading as normal a life as possible) and problem solving (Snethen et al. 2001). For instance, Giarelli et al.’s (2008a) concept of ‘shifting reasoning’, involved a reflection on problem solving, thinking and conflict resolution. Snethen et al. (2001) found that illness management was both parent- and self-focused. Parent-focused illness management was also identified in which adolescents shared a desire to be independent yet perceived they were still dependent on their parents to help take care of them. Meanwhile, during self-focused illness management youth perceived their treatment as difficult and did not want to be perceived as being different from their peers (Snethen et al. 2001).

Schneider et al. (2007) found that three self-management styles emerged including ‘methodical style’ (e.g., careful meal planning and insulin administration), ‘adaptive style’ (e.g., blood glucose testing, exercise and self-care adjustments) and ‘inadequate style’ (e.g., moderate rates of self-care adjustments and low disease self-management scores). Jedeloo et al. (2010) similarly identified four profiles for self-management among youth: ‘conscious and compliant’, ‘backseat patient’, ‘self-confident and autonomous’, and ‘worried and insecure.’ Each profile differed in the level of independence, involvement with self-management, adherence to treatment regimens, and the appreciation of parents’ and health care providers’ roles.

Specific strategies that youth used to manage their condition included altering their activity level to manage their illness (Ayala et al. 2006) and engaging in private self-focus (Van Pelt et al. 2006). Meanwhile, young women with spina bifida described how they used problem solving to manage daily challenges (Bellin et al. 2007) and youth with diabetes described how they avoided others when experiencing low blood sugar to avoid conflict (Snethen et al. 2001). Youth need to feel that managing their health is not at the expense of personal and social roles (Sawyer et al. 2007a,b). Most adolescents tried to achieve normalcy, however, they were also aware of the limitations of their condition. This was reflected in a theme found in Herrman’s (2006) study ‘you have to deal with it’ where diabetic youth developed creative methods to cope with their illness on a daily basis. Indeed the coping styles varied greatly amongst adolescents in these studies.

Parental involvement in the transition toward shared management

The idea of shared illness management and transitioning youth from parent-dominant management toward independence was a pervasive theme in the studies examined here. Shared decision-making refers to including youth in health care decisions and helping them to gain more ownership for their illness (Ayala et al. 2006, Giarelli et al. 2008a, Dashiff et al. 2009). Adolescents reported that helpful behaviour included parents giving tangible assistance like refilling prescriptions and providing financial support (Hanna & Guthrie 2001). Some adolescents found directive guidance (i.e., behaviours to aid performance) was helpful but not when advice was too direct or not needed (Hanna & Guthrie 2001).

Adolescents’ positive perceptions of shared care on direct management tasks were significantly associated with better self-management (Herrman 2006, Vesco et al. 2010). Stinson et al. (2008) similarly found that adolescents with juvenile arthritis need to ‘let go’ from others who have managed their illness and gain control and ownership themselves. Most adolescents tend to gain more responsibility as they grow older while parents continue to share management (Herrman 2006). Schilling et al. (2006) found that early adolescents (aged 11–15 years) performed much of their own self-care while parents actively participated. During mid-adolescence, however, most youth began to manage their own care (Schilling et al. 2006). Williams (2000) found three key factors assisted in the transfer of responsibility to youth: parents’ perceptions of the benefits of transferring responsibility; youth’s perceptions of the benefits; and the available physical, social and psychological recourses to support such a transfer.

Discussion

This integrative review synthesised findings from 34 empirical studies about the factors that influence how adolescents self-manage chronic illness. The main findings from each of the studies revealed a consistent pattern of key themes that hindered or facilitated chronic illness self-management. Thematic barriers to adolescents managing illness included: socio-demographic characteristics, medication adherence, psychosocial barriers, and parental involvement. Facilitating themes included: psychosocial factors, knowledge about illness, effective coping mechanisms and self-management styles, and shared management with parents.

Psychosocial factors (such as attitude and self-efficacy), parental involvement, and leading as normal a life as possible appeared to be the most predominant issues – acting as both barriers and facilitators to chronic illness self-management among adolescents. Viewing illness as a disruption to life and coping with the associated stigma and discrimination is consistent with past research on adults (Bury 1982, Lindsay 2009b, 2010b). Several factors, such as receiving social support and knowledge about the condition influenced the process by which parents and adolescents negotiated roles within a shared management framework (Bellin et al. 2007, Kieckhefer & Trahms 2002). This is consistent with past research showing that developing and maintaining support is important for keeping a positive attitude when living with chronic illness (Lindsay et al. 2008, Lindsay 2010b, Taylor et al. 2008). Many of the studies examined in this review described the normalisation and problem solving techniques that adolescents used to deal with their illness (Snethen et al. 2001, Giarelli et al. 2008a).

These themes illustrate that while many developmental tasks are similar to their peers, the experience of chronically ill youth in transition to adulthood is different because illness management is an integral part of their lives and their families are heavily involved. Further research is needed to clarify the process of how and when adolescents take ownership for their chronic illness. Our review indicated that developmental readiness strongly influences transition to self-management for youth; however, self-management models are typically designed for adult-onset conditions and often do not incorporate developmental contexts. We argue that a multi-prong approach is needed beyond individual level interventions to address the needs of parents/families, peers, teachers, and the social stigma often attached to living with chronic illness.

Beyond a need to understand the processes underlying the acquisition of self-management, additional knowledge gaps remain. Generally, the studies in this review focused on individual factors influencing self-management with much less focus on socio-contextual and environmental factors. Most of the studies explored self-management of chronic illness in the home or school context while little is known about other contexts such as work, extra-curricular activities, and community participation. The process of adjusting to a chronic illness is complex and involves fluctuations and movement back and forth as individuals come to grip with their condition which also changes over time as they age and as life evolves around them (Bury 1982, Paterson 2001, Lindsay 2009a,b).

Adjusting to the onset of a chronic illness is often conceptualised as an internal process; however, this does not fully capture societal reactions to illness (Bury 1982, Corbin & Strauss 1991). Chronic illness does not occur in a closed system (Paterson 2001, Lindsay 2010c); but rather it is experienced within the structures of everyday life (Bury 1982). Among studies exploring socio-demographic influences, minority ethno-cultural status and low socio-economic status were linked with barriers to chronic illness self-management (Lipton et al. 2003, Rhee et al. 2009). These findings are consistent with past research on adults showing that socio-demographic factors play a key role in influencing people’s ability and motivation to manage their chronic illness (Lindsay 2008). Further work is needed to explore the role of social and environmental context on chronic illness self-management which received little attention.

Limitations and research gaps

The focus of this integrative review was to synthesise findings from studies examining adolescents’ perspectives of self-managing chronic illness. Consistent with this aim, studies were exploratory in design, cross-sectional, had relatively small sample sizes, lacked comparison groups and employed qualitative and/or quantitative measures. Limitations inherent to these methodological approaches must be considered. First, generalizability of the findings may be limited as participants were self-selecting and from non-random convenience samples. A significant proportion of the studies (60%) focused on two chronic illnesses – diabetes and asthma. There was also limited variation in ethnic, racial and geographical contexts. A strength of the review, however, was that there was a relatively equitable gender representation. The identification of socio-demographic variables as a barrier to self-management indicates the need to pay particular attention to these characteristics. Given the exploratory nature of this work, understanding of commonalities and differences across different illnesses, cultural groups, and countries has not been sufficiently explored. Although there are limitations associated with self-reported data, these are expected given the exploratory rather than causal focus of the studies reviewed.

Building on the limitations identified, there were several consistent methodological gaps that future studies should address. First, illness duration and severity were often not considered. Past research has shown that this can be an important predictor of health behaviour where those who have had their illness a longer time are often more confident with self-management (Lindsay 2009a,b). Second, all of the studies focused on a single disease and did not address the needs of youth who have multiple chronic conditions, nor youth who have cognitive impairments. This is critical because the presence of other impairments can influence self-management (Lindsay 2009a). Third, less than half the studies identified used theoretical frameworks for conceptualising and examining self-management. Where theories were identified, they varied from individual-level health behaviour theories to socio-ecological theories; each providing a different focus regarding personal and external influences on self-management. Our findings indicate that theories incorporating social-contextual factors are essential for fuller understandings of youth self-management, in application to both clinical interventions and research designs. Finally, more longitudinal research is also needed to assess the process of how care is transferred from parents to adolescents. Relatively little is known about how parents recognise and act on signs for youth to assume more self-care responsibilities (Sawyer & Aroni 2005, Schilling et al. 2006).

Relevance to clinical practice

The themes identified in this review have important implications for clinical practice. Self-care decision-making is a complex process and involves assuming control of self-management, fine-tuning the basis on which self-management decisions should be made and understanding how to judge the quality of decisions (Thorne et al. 2003, Lindsay 2007). Assessing self-management skills, including underlying components such as attitude and self-efficacy of youth with chronic conditions is critical for supporting the range of condition-related self-care and life skills needed for a successful transition to adulthood (Schilling et al. 2006, Sawin et al. 2009) and for the delivery of care in a developmental appropriate way.

Beyond developing knowledge and skills in youth, a key area for clinical intervention is social context; specifically the interpersonal relationships to support transition to shared-management and decision-making. Support and confirmation by others, including family members and peers, are important in the transition toward autonomy in self-management for teenagers (Giarelli et al. 2008b, Karlsson 2008). Parental support can increase youth’s confidence in their abilities to manage their condition and promote ownership of their condition. Specific strategies for clinicians may include family education about gradual shifts in responsibility and parent-to-parent support networks. In addition, connecting youth with peers with the same condition can decrease isolation (Stinson et al. 2008). Peer facilitators could also engage youth through shared experiences, persuasion and behaviour modelling (Gibson et al. 2009). Shared decision-making between patients and health care providers should be advocated because of its potential to improve the quality of the decision-making process and hopefully, patient outcomes (Gravel et al. 2006, Lindsay 2007). Finally, greater education and more interventions are needed to address the complex nature of managing chronic illness during adolescence.

Conclusion

This study contributes to our understanding of self-management of chronic illness among adolescents. Our findings point to the factors that hinder and facilitate managing health. Past research has largely focused on adults’, parents’ or health care providers’ perspectives. These results suggest that clinicians need to stimulate the enabling factors, remove barriers to self-management and strive to develop a better understanding of the contextual factors influencing self-care. Limitations of this review include the selection of English language and search terms used which may have limited the breadth of themes identified. Nevertheless, the consistency of the key findings suggest that they can provide evidence for developing clinical interventions for youth and their families related to self-management of chronic illness.

Acknowledgements

Thanks to Suzanne Robinson who helped to compile the articles for this review paper.

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