A Longitudinal Study of Depressive Symptoms, Neuropsychological Functioning, and Medical Responsibility in Youth With Spina Bifida: Examining Direct and Mediating Pathways

Stern, Alexa; Driscoll, Colleen F Bechtel; Ohanian, Diana M.; Holmbeck, Grayson N.

doi:10.1093/jpepsy/jsy007

Cited by 25 publications

(9 citation statements)

References 39 publications

(50 reference statements)

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“…Notably, associations were only found between teacher-and self-reported youth internalizing symptoms and pain. Similar findings involving teacherreported data have been demonstrated in other research examining youth psychological functioning in SB (e.g., Stern, Driscoll, Ohanian & Holmbeck, 2018), possibly indicating that the connection between pain and psychosocial functioning is particularly salient in the school environment. In other words, health providers who rely heavily on parent report of youth psychosocial functioning may be missing important information about youth wellbeing and critical areas for early intervention.…”

Section: Discussionsupporting

confidence: 88%

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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Section: Discussionsupporting

confidence: 88%

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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“…In the context of the COVID-19 pandemic, AYA-SB must also confront new barriers to adherence and self-management ( Plevinsky et al, 2020 ), disrupted social relationships, increased time at home (which may be associated with increased family conflict), and greater increases in time accessing technology and social media ( Psihogios et al, 2020 ). Variable cognitive and executive functioning deficits present in SB may also make it difficult to comprehend incoming information about the virus, reasons for social distancing, and quarantining ( Stern et al, 2018 ). Parents of youth with SB (<18 years of age) already confront a range of challenges related to managing their child’s medical regimen, concern about their child’s health, and uncertainty regarding their child’s independence ( Mullins et al, 2007 ).…”

Section: Introductionmentioning

confidence: 99%

“We Are Anxious Every Day”: COVID-19 Impacts on Youth with Spina Bifida

Stiles‐Shields

Kritikos

Ridosh

et al. 2021

Journal of Pediatric Psychology

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Objective This study examined the impact of the COVID-19 pandemic on a national sample of adolescents and young adults (AYA) with spina bifida (SB) and parents of youth with SB. Methods AYA with SB (15–25; n = 298) and parents of children with SB (n = 200) were recruited to complete an anonymous, online survey in English or Spanish. Participants provided information about demographic and condition characteristics, as well as their technology access and use for behavioral health care. They also completed the COVID-19 Exposure and Family Impact Survey (CEFIS), which includes Exposure, Impact, and Distress subscales. Exploratory correlations and t-tests were used to examine potential associations between CEFIS scores and demographic, medical, and access characteristics. Qualitative data from the CEFIS were analyzed using thematic analysis. Results Scores on the Exposure, Impact, and Distress subscales demonstrated significant variability. Demographic associations with Exposure differed for those with higher Impact and Distress (e.g., White, non-Hispanic/Latino AYA reported higher rates of exposure [p = .001]; AYA who identified with a minoritized racial/ethnic identity reported greater impact [p ≤ .03]). Impacts to mental and behavioral health (n = 44), interference with medical care (n = 28), and interpersonal challenges (n = 27) were the most commonly occurring qualitative themes. Conclusions The current findings implicate differential impacts to individuals with SB and their families based on demographic, medical, and systemic factors (e.g., minoritized status). Recommendations to support families with SB and other pediatric conditions are made.

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“…This examination of benefit-finding with young adults with SB, who have had their condition since birth, is therefore unique. Second, SB has a multifaceted symptom profile, and includes cognitive difficulties, such as variable and often lower IQ, executive functioning deficits, trouble with independent functioning, and language difficulties (Stern et al, 2018; Vachha and Adams, 2003). All of these symptoms may impact how an individual perceives and reports on perceived benefits of their condition compared to previous examinations of benefit-finding that have recruited typically-developing samples.…”

Section: Discussionmentioning

confidence: 99%

“…Second, individuals with SB have varied symptom profiles with overlapping features of physical disabilities, intellectual impairments, and chronic illnesses (Stiles-Shields et al, 2019). Although benefit-finding has been studied in individuals with chronic illnesses and physical disabilities, to our knowledge, there is no research to date examining benefit-finding in a population with below average IQ scores, executive functioning difficulties, delays in independent functioning (Stern et al, 2018), and language difficulties (Vachha and Adams, 2003). Given that benefit-finding is a cognitively demanding process of reappraising stress, threat, and negative implications, the cognitive challenges associated with SB may diminish an individual’s engagement in benefit-finding.…”

Section: Introductionmentioning

confidence: 99%

Benefit-finding among young adults with spina bifida

et al. 2021

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The purpose of the current study was to examine benefit-finding in a sample of young adults with SB and assess relationships between demographic and medical variables and benefit-finding. Young adults with SB ( N = 329), ranging in age from 18 to 30 ( M = 23.44 ± 2.93), completed the Benefit-Finding Scale (BFS), a 17-item self-report questionnaire, and reported on demographic and medical information related to their SB diagnosis. Participants endorsed a range of benefits associated with living with SB. The most frequently endorsed benefits were related to personal strengths, interpersonal relationships, and life philosophy. Younger age, majority race, higher education level, and employment were significantly associated with higher BFS scores. Young adults with SB report benefits associated with their chronic condition. Future research should examine these benefits in relation to psychosocial outcomes.

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A Longitudinal Study of Depressive Symptoms, Neuropsychological Functioning, and Medical Responsibility in Youth With Spina Bifida: Examining Direct and Mediating Pathways

Abstract: One way in which neurocognitive dysfunction may hinder the development of medical autonomy in youth with SB is through an increased risk for depressive symptoms.

Cited by 25 publications

References 39 publications

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

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

“We Are Anxious Every Day”: COVID-19 Impacts on Youth with Spina Bifida

Benefit-finding among young adults with spina bifida

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