Testing the Utility of a Bio-Neuropsychosocial Model for Predicting Medical Adherence and Responsibility During Early Adolescence in Youth With Spina Bifida

Psihogios, Alexandra M.; Murray, Caitlin B.; Zebracki, Kathy; Acevedo, Laura; Holmbeck, Grayson N.

doi:10.1093/jpepsy/jsw092

Cited by 15 publications

(22 citation statements)

References 46 publications

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“…The aims of the included studies varied from executive function to weight loss, but all of these foci relate to issues that arise for AYA-SB and their selfmanagement concerns. For example, activity limitations and decreased physical activity (Polfuss, Bandini, & Sawin, 2017), obesity (Polfuss et al, 2017), motor function difficulties (Copp et al, 2015), limited social support (Holmbeck et al, 2003), and executive functioning difficulties (Dennis et al, 2006) have all been noted for AYA-SB and are therefore directly related to their self-management (Psihogios, Murray, Zebracki, Acevedo, & Holmbeck, 2017). Thus, the included studies covered multiple domains that may impact self-management for AYA-SB and should therefore be considered for user needs in a BIT designed to improve self-management.…”

Section: Aimsmentioning

confidence: 99%

A Systematic Review of Behavioral Intervention Technologies for Youth With Chronic Health Conditions and Physical and Intellectual Disabilities: Implications for Adolescents and Young Adults With Spina Bifida

Stiles‐Shields

Crowe

Driscoll

et al. 2018

Journal of Pediatric Psychology

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Objective Behavioral intervention technologies (BITs) stand as a promising delivery mechanism that overcomes multiple condition-specific and access barriers for self-management interventions for adolescents and young adults with spina bifida (AYA-SB). The purpose of the current review was to synthesize the behavioral and self-management intervention literature in conditions that have overlapping symptoms with youth with SB and to develop a model of likely user needs for AYA-SB that promotes self-management. Method The search strategy was conducted by a medical research librarian in the following databases: MEDLINE (Ovid), EMBASE (Elsevier), PsycINFO (EbscoHost), the Cochrane Library (Wiley), and Web of Science (Thomson Reuters) databases. The review was based on a systematic narrative synthesis framework and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (registration number CRD42018092342). Results In total, 18 articles were included in the current BIT review. The majority of included studies (1) targeted the management of chronic health conditions, (2) were informed by evidence-based approaches, (3) relied on content delivery, (4) were Web-based, (5) used linear or user-driven workflows, (6) included professional human support, and (7) included a control condition. Conclusions Many of the evaluated BITs resulted in acceptable usage and maintained or improved targeted symptoms. A user needs model for AYA-SB is proposed with the intention that future research will promote further refinement and ultimate deployment of a BIT for AYA-SB to promote self-management.

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Section: Aimsmentioning

confidence: 99%

A Systematic Review of Behavioral Intervention Technologies for Youth With Chronic Health Conditions and Physical and Intellectual Disabilities: Implications for Adolescents and Young Adults With Spina Bifida

Stiles‐Shields

Crowe

Driscoll

et al. 2018

Journal of Pediatric Psychology

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“…Evidence [1,12,15,[59][60][61] 10. Discuss with parents the need to help their child develop basic money management skills [1].…”

Section: Discussionmentioning

confidence: 99%

“…Evidence [12][13][14][15] Neuropsychology Guidelines [63] -Assess the child's ability to use transportation. Encourage their enrollment in driver's education (adaptive, if needed) if the teen possesses the necessary cognitive and motor abilities.…”

Section: Clinical Consensusmentioning

confidence: 99%

Self-management and independence guidelines for the care of people with spina bifida

Logan

Sawin

Bellin

et al. 2020

PRM

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Self-management and independence behaviors are associated with improved health conditions common to spina bifida such as skin integrity and bowel and bladder management. While most children with spina bifida ultimately achieve basic self-care behaviors, (e.g., dressing appropriately, planning activities with peers, or cooking pre-planned meals), they often lag 2–5 years behind their typically-developing peers in these activities [1]. Valid and reliable condition-specific assessments of self-management and independence are critical to optimizing outcomes for this population. Partnerships among parents, clinicians, and youths with spina bifida are essential to implementing tailored interventions based on these assessments. The guidelines delineated in this article are informed by current self-management research for people with spina bifida and offer recommendations to promote self-management and independence across the lifespan.

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“…Participants were recruited from a larger ongoing longitudinal study examining family and peer relationships, neuropsychological functioning, and psychological adjustment in youth with SB (e.g., Psihogios, Murray, Zebracki, Acevedo, & Holmbeck, 2017). This study represents an analysis of psychosocial functioning and pain symptoms during the first two time points, with each time point spaced 2 years apart.…”

Section: Participantsmentioning

confidence: 99%

Longitudinal Associations Between Pain and Psychosocial Adjustment in Youth With Spina Bifida

Ohanian

Murray²,

Shirkey

et al. 2020

Journal of Pediatric Psychology

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Objective This study examined: (a) the nature and prevalence of pain in youth with spina bifida (SB) (b) common coping responses to pain, and (c) longitudinal, bi-directional associations between internalizing symptoms and pain characteristics. Methods Data were collected from youth (N = 140, 53.6% female, ages 8–15 at Time 1) and their parents and teachers at two time points spaced 2 years apart. Youth reported on several pain characteristics and coping responses. Multiple informants reported on child internalizing symptoms. Evaluation of Aims 1–3 was based on descriptive analyses, bivariate correlations, and linear and logistic regressions. Results About 25% of the sample reported chronic pain (e.g., experiencing pain one or more times per week over the past 3 months) at Time 1 or 2, with roughly one-third of this chronic pain subsample reporting chronic pain both time points. Pain was usually rated as mild in intensity for the full sample and most commonly experienced in the head, abdomen, and back, and described as “aching.” Youth with chronic pain reported significantly higher pain intensity and tended to use condition-specific methods to cope with pain (e.g., taking off braces). In 2 of 10 analyses, internalizing symptoms at Time 1 were associated with chronic pain and pain intensity at Time 2. Conclusions Roughly one-fourth of youth with SB are at risk for experiencing chronic pain, highlighting the need for increased assessment and treatment of pain in this population. Youth psychological functioning appears to more often precede, rather than being a consequence of pain symptoms.

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Testing the Utility of a Bio-Neuropsychosocial Model for Predicting Medical Adherence and Responsibility During Early Adolescence in Youth With Spina Bifida

Abstract: This study offered intervention targets to promote self-management and adherence for youth with SB and their families, including parent stress-management and family problem-solving.

Cited by 15 publications

References 46 publications

A Systematic Review of Behavioral Intervention Technologies for Youth With Chronic Health Conditions and Physical and Intellectual Disabilities: Implications for Adolescents and Young Adults With Spina Bifida

A Systematic Review of Behavioral Intervention Technologies for Youth With Chronic Health Conditions and Physical and Intellectual Disabilities: Implications for Adolescents and Young Adults With Spina Bifida

Self-management and independence guidelines for the care of people with spina bifida

Longitudinal Associations Between Pain and Psychosocial Adjustment in Youth With Spina Bifida

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