The Relationship of Transition Readiness, Self-Efficacy, and Adherence to Preferred Health Learning Method by Youths with Chronic Conditions

Johnson, Meredith A.; Javalkar, Karina; Tilburg, Miranda A.L. van; Haberman, Cara; Rak, Eniko; Ferris, Maria

doi:10.1016/j.pedn.2015.05.014

Cited by 38 publications

(38 citation statements)

References 19 publications

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“…Parents are proposed to be key drivers of the HCT process for youth in the models that have been published (Betz et al, ; Schwartz et al, ) and are the preferred youth's resource to learn about their health condition (Johnson et al, ). As our knowledge of HCT readiness expands, it will be important to continue to build an understanding of the relationships between the youth self‐report and parent proxy measures as well as an understanding of those parent factors that lead parents to underestimate or overestimate youth's HCT readiness.…”

Section: Discussionmentioning

confidence: 99%

“…Parents whose children take a greater number of medications, have attention deficit hyperactivity disorder (in addition to other comorbidities), and/or have more frequent health‐related visits report higher caregiver burden (Karina Javalkar et al, ). Furthermore, parents who are overloaded with the care for their child may not be able to teach their child self‐management and HCT readiness skills, which is concerning because youth with chronic conditions prefer to learn from their parents about their health condition (Johnson et al, ). Previous studies have shown that role overload in parents is associated with worse outcomes, including increased marital conflict (Perry‐Jenkins, Goldberg, Pierce, & Sayer, ), decreased warmth in parents and adolescents (Wheeler, Updegraff, & Crouter, ), and increased parent–adolescent conflict (Crouter, Bumpus, Maguire, & McHale, ).…”

Section: Introductionmentioning

confidence: 99%

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Association of youth health care transition readiness to role overload among parents of children with chronic illness

Hart

Tilburg

Campbell

et al. 2019

Child

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Background: A parent's level of role overload, a situation in which the demands of an individual's roles are beyond their capacity to perform adequately, has been associated with poor outcomes in adolescents. It is unknown if role overload in parents is associated with less health care transition (HCT) readiness in their children with chronic conditions. We sought to assess this relationship.Methods: Youth with chronic conditions attending a therapeutic camp and their parents completed online consents/assents and de-identified surveys. Parents reported on parental role overload using the Reilly Role Overload Scale and a proxy assessment of the youth's HCT readiness using the STAR x -Parent Questionnaire. Youth self-reported on their HCT readiness using the STAR x Questionnaire.Linear regression measured the relationship between parent role overload and HCT readiness, controlling for youth's age, sex, and degree of youth's educational support.Results: One hundred fifty-two parents and 50 youth completed the measures.Greater parental role overload was associated with less overall HCT readiness on the parent proxy measure (β = −.12, P ≤ .008) and a lower level in the selfmanagement domain on the parent proxy measure (β = −.20, P ≤ .001). We found no associations between parent role overload and youth self-report of HCT readiness. Conclusion:Parent's level of role overload had no association with youth's self-report of HCT readiness but was negatively associated with parent proxy report of their youth's HCT readiness, suggesting that parents with high levels of role overload may perceive their youth as less ready to transition to adultfocused care.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Association of youth health care transition readiness to role overload among parents of children with chronic illness

Hart

Tilburg

Campbell

et al. 2019

Child

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“…Questions were modified to be usable with a variety of chronic illnesses. We have used this adapted version of the scale in previous studies [23,24]. The possible range of scores was 5–45, with higher scores indicating greater self-efficacy.…”

Section: Methodsmentioning

confidence: 99%

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

et al. 2017

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Objective: The complex medical regimens of children and adolescents with chronic conditions can have a significant impact on families and households. Caregivers may experience burden, which can lead to negative health consequences and poor quality of life. The objective of this study was to determine child-related predictors and risk factors for caregiver burden among parents of children with chronic conditions. Methods: We distributed an institutional review board (IRB)-approved, online cross-sectional survey to parents of children who attended the Victory Junction therapeutic camp. Parents provided information on child demographics, disease characteristics, and healthcare utilization. Parents also answered the adapted Zarit Burden Interview, which measured caregiver burden. Children completed scales about self-management and self-efficacy. Linear regression analyses determined how children’s disease characteristics, health utilization, and self-management skills were associated with caregiver burden. Results: We enrolled 150 mother-child dyads. The mean age of child participants was 12.23 years (±2.5), with an age range of 6 to 16 years. It was determined that children’s number of medicines and injections (β = 0.161, p = 0.047), a diagnosis of attention-deficit/hyperactivity disorder (ADHD) in addition to the primary medical condition (β = 0.216, p = 0.008), frequent visits with a primary care provider (PCP) (β = 0.209, p = 0.026) and emergency room (ER) visits (β = 0.197, p = 0.038), and lower child self-efficacy (β = −0.241, p = 0.041) were predictors of increased caregiver burden. Conclusions: We identified risk factors for caregiver burden among mothers. Future studies should explore additional child-related characteristics as they relate to caregiver burden, and should determine if interventions for mothers of children with chronic conditions can lead to positive outcomes.

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“…1,2 Medication nonadherence is *50% for AYAs with cancer and other chronic health conditions. [3][4][5][6][7][8] Less than 95% adherence to 6mercaptopurine is associated with a 2.7-fold increased risk of relapse among children and adolescents with acute lymphoblastic leukemia. 9 Poorer adherence to sulfamethoxazole/ trimethoprim has been associated with decreased long-term survival.…”

mentioning

confidence: 99%

Oral Medication Adherence Among Adolescents and Young Adults with Cancer Before and Following Use of a Smartphone-Based Medication Reminder App

Linder

Macpherson

et al. 2019

Journal of Adolescent and Young Adult Oncology

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This study evaluated oral medication adherence among adolescents and young adults (AYAs) with cancer during a trial of a smartphone-based medication reminder application (app). Methods: Twenty-three AYAs receiving at least one prescribed, scheduled oral medication related to their outpatient cancer treatment participated in this 12-week single-group interrupted time series longitudinal design study. Baseline oral medication adherence was monitored using electronic monitoring caps for 4 weeks. Participants then used a medication reminder app and continued to have their oral medication adherence monitored for 8 weeks. Participants completed an electronically administered weekly survey addressing perceived adherence and reasons for nonadherence. Results: Four adherence phenotypes were identified using visual graphical analysis of individual participants' weekly adherence: (1) high adherence during the preintervention and intervention periods (n = 13), (2) low preintervention adherence and improved adherence during the intervention period (n = 3), (3) low adherence during both periods (n = 6), and (4) high preintervention adherence and low adherence during the intervention period (n = 1). Growth curve models did not show significant changes in adherence by preintervention versus intervention trajectories (p > 0.05); however, the variance in adherence during the intervention narrowed for more highly adherent AYAs. ''Forgetfulness'' was the most frequently reported reason for nonadherence. Conclusion: Although overall adherence did not improve following use of the app, the variance decreased for more highly adherent participants. Additional or alternative interventions are needed for AYAs with persistently poor adherence. Assessment of adherence patterns may support individualized recommendation of tailored interventions.

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The Relationship of Transition Readiness, Self-Efficacy, and Adherence to Preferred Health Learning Method by Youths with Chronic Conditions

Cited by 38 publications

References 19 publications

Association of youth health care transition readiness to role overload among parents of children with chronic illness

Association of youth health care transition readiness to role overload among parents of children with chronic illness

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

Oral Medication Adherence Among Adolescents and Young Adults with Cancer Before and Following Use of a Smartphone-Based Medication Reminder App

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