Mother–Adolescent Agreement Regarding Decision-Making Autonomy: A Longitudinal Comparison of Families of Adolescents with and without Spina Bifida

Devine, Katie A.; Wasserman, Rachel M.; Gershenson, Lily; Holmbeck, Grayson N.; Essner, Bonnie S.

doi:10.1093/jpepsy/jsq093

Cited by 38 publications

(39 citation statements)

References 23 publications

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“…Several studies have shown that for adolescents with chronic conditions, the pathway towards independence is often delayed and associated with conflicts. Parental overprotection and a complicated separation process, caused by medical issues, do play a role (Devine et al 2011, Hommel et al 2011. As the interviewees wished to exclude their parents from the workshop, an additional group meeting would give parents the opportunity to benefit from social support, as shown in other studies (Kingsnorth et al 2011, Akre & Suris 2014.…”

Section: Discussionmentioning

confidence: 97%

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An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme

Bomba

Herrmann-Garitz

Schmidt

et al. 2016

Health Soc Care Community

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The transition of adolescents with chronic conditions is a challenging task. This study aimed to explore the experiences and needs of adolescents with chronic conditions in the transition period and to apply these findings to the design of a generic patient education programme. Data were collected from a sample of 29 adolescents with chronic conditions from Northern Germany and Switzerland including a broad range of views due to variation in disease management and organisation of care both in paediatric and adult populations. Participants were interviewed in group (n = 18) or individual (n = 11) interviews between September 2011 and February 2012, and the data were analysed using qualitative content analysis. The findings revealed that the interviewees expressed high levels of competency in the management of their chronic conditions but identified gaps in healthcare and unmet needs during transition. In particular, they believed that they would benefit from opportunities to exchange ideas and more specific information with peers about vocational and medical issues concerning adolescent health. Identified themes reflecting adolescent needs were used to develop the transition workshop including modules regarding the following: transfer to adult medicine, their new role as a patient, orientation within the healthcare system, vocational issues, detachment from parents, social support, contraception, substance abuse, family planning, stress-management, activation of resources and developing personal goals. The workshop's content was largely generic and included some condition-specific components. The workshop was designed as a compact 2-day patient education programme in a group setting for adolescents prior to their transfer to adult care. The guiding principle was the idea of empowerment by supporting the adolescents through various interactive methods to develop adequate knowledge, skills, understanding and motivation regarding their chronic conditions. We conclude that patient education programmes promoting adolescent self-management and empowerment increase the preparedness for transition.

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Section: Discussionmentioning

confidence: 97%

“…Parental overprotection and a complicated separation process, caused by medical issues, do play a role (Devine et al . , Hommel et al . , Peeters et al .…”

Section: Discussionmentioning

confidence: 99%

An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme

Bomba

Herrmann-Garitz

Schmidt

et al. 2016

Health Soc Care Community

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“…The Decision‐Making Questionnaire (DMQ) measures a child's autonomy in decision making by assessing the parent's beliefs regarding the amount of autonomy given to the child within the family on both medical and nonmedical rules . Respondents rate the degree of autonomy for a given rule on a four‐point scale ( 1 = I/We tell my child exactly what to do, 2 = I/We ask my child's opinion about this, but I/We usually have the final say, 3 = I/We leave this up to my child to decide, and 4 = Does not apply) . Cumulative total scores were obtained for nonmedically related rules and medically related rules, with a response of 4 (does not apply) not included in calculations.…”

Section: Methodsmentioning

confidence: 99%

The relationship of child executive functions to parenting capacities in childhood acute lymphoblastic leukemia survivors

Sharkey

Clawson

Mullins

et al. 2019

Pediatric Blood & Cancer

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Objective The current study examined associations between child executive functions and parenting capacities in long‐term survivors of childhood acute lymphoblastic leukemia (ALL). Methods Participants included 188 parent‐child dyads; children were at least 8 years of age, 5 years postdiagnosis of ALL, and previously treated with chemotherapy only. Parents completed the Parental Protection Scale (PPS), Child Vulnerability Scale (CVS), and Decision‐Making Questionnaire (DMQ). Children completed measures of executive functioning and general cognitive abilities. Multivariate multiple regression examined associations between child executive functioning and parenting, while controlling for child age, treatment risk, maternal education, and child intelligence quotient. An exploratory aim identified latent profiles of parenting capacities. Results Higher child cognitive flexibility (β = –0.16, P = .02) and planning abilities (β = –0.16, P = .049) were related to less parental overprotection. No other neurocognitive measures were related to child autonomy in decision making or perceived child vulnerability. For the exploratory aim, we found (a) a large class defined by normative parenting (94.3%) and (b) a small class characterized by higher levels of child vulnerability and overprotection. Class membership was unrelated to executive functioning, but higher maternal education was related to higher odds of class 2 membership (OR = 0.58, P = .04). Conclusions Results suggest that parents respond to child executive function difficulties with greater overprotection, which may be adaptive but not conducive to the development of independence. Although most parents report normative levels of child vulnerability and overprotection, a small subset demonstrate parenting practices that may place some survivors at risk for adverse outcomes.

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“…For example, there is often a tension between the views of people with disabilities and their parents (particularly adolescents and adults with disabilities) in which the former may want to push for more independence and autonomous decision making and the latter may be somewhat overprotective (Carey, 2009). These tensions are likely to be amplified when adults are coresiding with their parents, which may negatively affect the adult with disabilities and their family caregivers (Devine, Wasserman, Gershenson, Holmbeck, & Essner, 2010), although there is some research that highlights families of adolescents with disabilities experience closer relationships and less family conflict (Hartley, Barker, Seltzer, Greenberg, & Floyd, 2011;Jandazek, DeLucia, Holmbeck, Zebrack, & Friedman, 2009). These issues may vary across racial and ethnic groups in which interdependence is a prized value versus independence (Ben-Moshe & Magaña, 2014).…”

Section: Personal Level: Individuals With Disabilities Individual Camentioning

confidence: 99%

Introduction to the special issue: Family Support of Persons with Disabilities Across the Life Course

Grossman

Magaña

2016

Journal of Family Social Work

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Mother–Adolescent Agreement Regarding Decision-Making Autonomy: A Longitudinal Comparison of Families of Adolescents with and without Spina Bifida

Abstract: SB and low SES are risk factors for lower levels of agreed-upon decision-making autonomy. Future studies should examine how parent-adolescent agreement regarding autonomy relates to psychosocial outcomes.

Cited by 38 publications

References 23 publications

An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme

An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme

The relationship of child executive functions to parenting capacities in childhood acute lymphoblastic leukemia survivors

Introduction to the special issue: Family Support of Persons with Disabilities Across the Life Course

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