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1.
J Pediatr Rehabil Med ; 16(4): 629-637, 2023.
Article in English | MEDLINE | ID: mdl-38073339

ABSTRACT

PURPOSE: Pediatric patients with spina bifida often experience neurogenic bowel dysfunction. Although cecostomy tubes could improve bowel continence, their effectiveness is not well established in this population. The aims of this study were to better understand the effectiveness of cecostomy tubes relative to other management strategies (between-subject) and to explore their effectiveness among patients who received these placements (within-subject). METHODS: Retrospective analysis of data from pediatric patients enrolled in a national spina bifida patient registry (n = 297) at a single multidisciplinary clinic was performed, covering visits between January 2014 -December 2021. Linear and ordinal mixed effect models (fixed and random effects) tested the influence of cecostomy status (no placement vs placement) and time (visits) on bowel continence while controlling for demographic and condition-specific covariates. RESULTS: Patients with cecostomy tubes had higher bowel continence compared to patients without placements (B = 0.695, 95% CI [0.333, 1.050]; AOR = 2.043, p = .007). Patients with cecostomy tubes had higher bowel continence after their placements compared to before (B = 0.834, 95% CI [0.142, 1.540]; AOR = 3.259, p = 0.011). CONCLUSION: Results indicate cecostomy tubes are effective for improving bowel continence in this pediatric population. Future research is needed to conduct risk analyses and determine the clinical significance of these effects.


Subject(s)
Fecal Incontinence , Spinal Dysraphism , Child , Humans , Cecostomy/methods , Retrospective Studies , Fecal Incontinence/etiology , Fecal Incontinence/epidemiology , Spinal Dysraphism/complications , Risk Assessment
2.
Nurs Res ; 71(2): 96-103, 2022.
Article in English | MEDLINE | ID: mdl-34967824

ABSTRACT

BACKGROUND: The 2019 novel coronavirus pandemic has affected many aspects of American life, with reported increases in parental anxiety and adverse health outcomes among children. However, it is unknown how family functioning and parental anxiety may be associated with child health outcomes during this pandemic. OBJECTIVES: The aim of this study was to explore associations among parental worrying, family functioning, and the health-related quality of life (HRQoL) of middle and high school-aged children in the United States during the 2019 novel coronavirus pandemic. METHODS: Ninety-three parent-child dyads were recruited via snowball sampling through the WhatsApp messenger from December 2020 to February 2021 in this exploratory cross-sectional study. Each family completed a series of self-report measures, including the General Functioning Scale-Family Assessment Device and the Worry Domains Questionnaire for parent respondents and the KIDSCREEN-10 for child respondents. A hierarchical regression analysis was performed to examine effects of parental worrying and family functioning on the HRQoL of middle and high school-aged children. RESULTS: Lower levels of parental worrying and better family functioning predicted better child HRQoL, whereas parental worrying was associated with worse family functioning. The relationship between family functioning and child HRQoL did not differ by levels of parental worrying. Increased child age and parental education were associated with worse child HRQoL. DISCUSSION: The high socioeconomic status sample reported healthy family functioning during the 2019 novel coronavirus pandemic. Family functioning appears to improve child HRQoL consistently, even as parental worrying increases or decreases, although increased worrying would likely decrease family functioning and child HRQoL. The inverse relationships of parental educational attainment with family functioning and child HRQoL are surprising; they may be due to pandemic circumstances and the nature of the sample being high-socioeconomic status families with middle and high school-aged children.


Subject(s)
COVID-19 , Quality of Life , Anxiety/epidemiology , COVID-19/epidemiology , Child , Cross-Sectional Studies , Humans , Pandemics , Parents , SARS-CoV-2 , Surveys and Questionnaires
3.
West J Nurs Res ; 43(8): 742-750, 2021 08.
Article in English | MEDLINE | ID: mdl-33325338

ABSTRACT

In this investigational cross-sectional study, we explored the relationships among caregiver burden, depressive symptoms, spirituality, and quality of life (QOL) in 58 parental caregivers of adolescents with spina bifida (SB). A hierarchical linear regression analysis provided evidence that depressive symptoms and caregiver burden were negatively related to QOL scores, but spirituality was positively related. We found a significant interaction between caregiver burden and spirituality, suggesting that spirituality moderates the relationship between caregiver burden and quality of life. The negative effect of caregiver burden on QOL decreased as spirituality increased. These results warrant further research into how caregiver burden and spirituality intersect and impact QOL in parental caregivers of adolescents with SB.


Subject(s)
Quality of Life , Spinal Dysraphism , Adolescent , Caregivers , Cross-Sectional Studies , Humans , Parents , Spirituality
4.
J Adv Nurs ; 76(7): 1627-1637, 2020 Jul.
Article in English | MEDLINE | ID: mdl-32242974

ABSTRACT

AIM: To investigate the relationships between spirituality, somatic symptom distress/severity, depressive symptoms and quality of life (QOL) for adolescents diagnosed with spina bifida (SB). DESIGN: Exploratory, cross-sectional design. METHODS: Fifty-eight adolescents with SB in southern California were recruited during routine visits to a multidisciplinary clinic at a healthcare university from January 2016-January 2017. Each adolescent completed a series of self-report measures, including the System of Belief Inventory, Somatic Symptom Scale, Patient Health Questionnaire and Pediatric Quality of Life Inventory. Path analysis was performed to examine regression coefficients for each direct and indirect effect. RESULTS: The mediation-moderation analysis showed that depressive symptoms fully mediated the relationship between symptom distress and QOL (B = 0.029 [0.014], CI [0.007, 0.061]) and higher levels of spirituality moderated the relationship between depressive symptoms and QOL (B = 0.052, p = .018). Spirituality was higher for adolescents with greater symptom severity; including shunt status Welch's F(1, 53.689) = 4.174, p = .046, level of lesion F(2,57) = 3.382, p = .041, and ambulation status F(3, 57) = 2.920, p = .042. CONCLUSION: Adolescents with SB who had greater levels of symptom distress experienced significantly higher levels of depressive symptoms and a lower QOL. Contrary to our expectations, adolescents with greater levels of spirituality had a lower QOL when depressive symptoms were mild/moderate, but no differences were noted when depressive symptoms were severe. IMPACT: This study examined the relationship between spirituality and quality of life (QOL) in adolescents with spina bifida, who were experiencing different levels of depressive symptoms and symptom distress/severity. Depressive symptoms appeared to have a more profound effect on QOL than spirituality. Accordingly, we recommend that healthcare professionals actively screen for depressive symptoms when assessing these adolescents and their physical symptoms/distress levels.


Subject(s)
Quality of Life , Spinal Dysraphism , Adolescent , Child , Cross-Sectional Studies , Depression/etiology , Humans , Spinal Dysraphism/complications , Spirituality , Surveys and Questionnaires
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