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This research was directed at determining the value of Gestalt play therapy for the high school learner with Spina Bifida. By undertaking a literature study regarding the child with Spina Bifida, as well as Gestalt play therapy, it was possible to determine what needs and difficulties these learners experience and how Gestalt play therapy can be implemented to address these needs and difficulties. The researcher concludes that any high school learner experiences a lot of developmental changes, but for the learner with Spina Bifida there are not only the social, personal, physical and emotional changes, but also the fact that because of the disability, more support and help structures are needed. It became evident that, for these learners, Gestalt play therapy is a very effective and useful intervention technique. Learners were guided towards awareness of themselves, as well as their inner strength to face the unfinished business in their lives. / Social work / M. Diac (Play Therapy)

This research was directed at determining the value of Gestalt play therapy for the high school learner with Spina Bifida. By undertaking a literature study regarding the child with Spina Bifida, as well as Gestalt play therapy, it was possible to determine what needs and difficulties these learners experience and how Gestalt play therapy can be implemented to address these needs and difficulties. The researcher concludes that any high school learner experiences a lot of developmental changes, but for the learner with Spina Bifida there are not only the social, personal, physical and emotional changes, but also the fact that because of the disability, more support and help structures are needed. It became evident that, for these learners, Gestalt play therapy is a very effective and useful intervention technique. Learners were guided towards awareness of themselves, as well as their inner strength to face the unfinished business in their lives. / Social work / M. Diac (Play Therapy)

A study was conducted to investigate factors associated with the perceived future self-efficacy in adolescents with spina bifida. Thirteen adolescents with spina bifida and their parents were surveyed. Seventeen adolescents without an identified disability and their parents were also surveyed. The Questionnaire of Future Adult Activities (QFAA) and the Health Attribution Test (HAT) were administered. Parent responses were compared to those of adolescents and adolescent responses were compared between groups. There was no overall correlation between parent and adolescent responses. Differences were found between responses of adolescents with spina bifida and adolescents without an identified disability. Limited correlations were found between the QFAA and the HAT.

Childhood obesity and resulting secondary complications in youth with disabilities are occurring in epidemic proportions, due in part to a trend of physical inactivity. The purpose of this study is to report the prevalence of overweight, the leisure time activity patterns, and the association between frequency of physically active leisure participation and body mass index for age, in a sample of 50 youth with spina bifida, ages 4.5 to 17.9 years. Results indicate that 52% of the sample are classified as at risk of overweight or overweight; 36% were male and 16% were female. The top five leisure time activities and team sport participation are identified. Subjects who did not use a wheelchair for ambulation participated significantly more in physically active leisure than subjects who used a wheelchair. Future research and rationale for physically active leisure as an intervention for youth with spina bifida are discussed.

Le Spina Bifida est une maladie congénitale rare due à anomalie de fermeture du tube neural ayant des conséquences physiques et fonctionnelles multiples. La prise en charge des séquelles digestives du Spina Bifida ne fait l’objet d’aucun consensus national ou international. Les objectifs de cette thèse translationnelle étaient de caractériser les plaintes anorectales des patients adultes ayant un Spina Bifida, d’en préciser les mécanismes physiopathologiques sous-jacents à partir des données de la manométrie anorectale et du barostat rectal et en étudiant les fonctions de la barrière épithéliale intestinale. Les plaintes anorectales des patients adultes ayant un Spina Bifida représentent leur deuxième plainte en terme de fréquence et sont l’incontinence fécale, et la constipation. Ces troubles peuvent évoluer au cours du temps ce qui justifie un suivi digestif au long cours. Le niveau lésionnel neurologique n’est ni associé aux troubles digestifs ni à à leur évolution. Les patients ayant un Spina Bifida ont une atteintede la fonction anale (défaut de contraction) et des fonctions rectales (diminution du tonus et de la compliance rectale). Ils ont également une hyperperméabilité paracellulaire et une diminution de la densité du tissu conjonctif; ces 2 anomalies étant corrélées entre elles. L’augmentation de la perméabilité paracellulaire était négativement corrélée avec la compliance rectale. Enfin, les patients ayant un Spina Bifida ont une augmentation de l’expression de TGFBeta1. Les anomalies des fonctions anorectales et de la barrière épithéliale intestinale pourraient être des cibles thérapeutiques potentielles dans la prise en charge des troubles anorectaux des patients adultes ayant un Spina Bifida. / Spina Bifida is a rare congenital disorder caused by an abnormal neural tube closure with multiple physical and functional consequences. The management of the digestive disorders of Spina Bifida is not consensual. The objectives of this present work were to characterize the anorectal complaints of adult patients with Spina Bifida, to specify the underlying pathophysiological mechanisms from the data of anorectal manometry and rectal barostat and to study the functions of the intestinal epithelial barrier. The anorectal complaints of adult patients with Spina Bifida represent their second complaint and are faecal incontinence and constipation. These disorders can change over time which justifies long-term digestive follow-up. The level of neurological lesion is neither associated with digestive disorders nor with their evolution. Patients with Spina Bifida have impaired anal function (lack of contraction) and rectal function (decreased tone and rectal compliance). They also have paracellular hyperpermeability and decreased connective tissue density ; these 2 anomalies are interrelated. The increase in paracellular permeability was negatively correlated with rectal compliance. Finally, patients with Spina Bifida have an increased expression of TGFBeta1. Abnormalities of anorectal function and intestinal epithelial barrier may be potential therapeutic targets in the management of anorectal disorders in adult patients with Spina Bifida.

While much research has focused on the psychosocial health of youth with spina bifida and their parents, less is known about the sibling experience. This cross-sectional mixed method study tested an ecological model of adjustment for adolescent siblings using self-report surveys. Convenience sampling methods were used to recruit 224 families from the Spina Bifida Association of America and three spina bifida clinic sites. The central hypotheses evaluated whether a set of ecological variables (stress appraisal, satisfaction with family functioning, warmth and conflict in the sibling relationship, and peer support) predicted sibling self-concept, prosocial behavior, and behavior difficulties, after controlling for spina bifida severity, length of time having a brother/sister with spina bifida, and sibling age. A potential moderating influence of sibling gender and birth order was also examined. A qualitative component was included to ascertain whether the variables included in the ecological model captured those concepts reported as salient by the siblings. Hierarchical regression equations tested the central hypotheses. Content analysis was performed on the qualitative data, with journaling and an external auditor used to enhance rigor.The ecological model explained a significant amount of variance in sibling self-concept, prosocial behavior, and behavior difficulties. Significant individual risk and protective factors were observed at several layers of sibling life, and there were divergent predictors of self-concept and behavior. Birth order emerged as an important moderating variable in several regression equations. The qualitative analysis revealed five major domains and twenty-one themes capturing the lived experience of siblings. Their stories reflected overall acceptance for the omnipresence of spina bifida, though ongoing difficulties such as jealousy, embarrassment, and guilt were evident, particularly for those participants in early adolescence. The journey toward acceptance of spina bifida was one marked by intense, and at times conflicted, emotions. Findings from this research suggest family-centered care may be enhanced by clarifying and supporting sibling perception of the impact of spina bifida, promoting a healthy family milieu characterized by communication sharing, growth opportunities, and positive sibling interactions, and encouraging opportunities for peer socialization.

A microbiota gastrointestinal humana normal é um ecossistema complexo constituído por microrganismos anaeróbios que desempenham papel fundamental na manutenção da saúde e de funções fisiológicas do hospedeiro. O presente estudo objetivou caracterizar a microbiota intestinal de pacientes portadores de constipação funcional e de pacientes com espinha bífida e intestino neurogênico e compará-las com pacientes saudáveis. Estudo transversal inclui 25 crianças com constipação funcional, 25 pacientes saudáveis e 14 pacientes com intestino neurogênico e espinha bífida. A metodologia molecular foi utilizada para determinação do perfil da microbiota intestinal. O DNA total das amostras de fezes foi extraído com o kit QIAamp DNA Stool®-QIAGEN e realizado sequenciamento do gene 16S rRNA (MiSeq (Illumina). As sequências obtidas foram processados no QUIIME. A análise dos dados obtidos foi realizada por meio de estatística descritiva. A diversidade e riqueza da microbiota intestinal foi avaliada pelos índices Shannon, Simpson e Chao e a contribuição de outras variáveis (sexo, tempo de amamentação exclusiva, uso de medicação nos pacientes constipados, tipo de parto e presença de sintomas no momento da coleta da amostra de fezes) foi obtida por análises multivariada. Firmicutes foi o filo mais predominante seguido do filo Bacteroidetes nos três grupos de estudo. Bifidobacterium foi mais abundante nos constipados funcionais do que nos saudáveis. O filo Tenericutes foi mais abundante em pacientes que nasceram por parto cesárea se comparados com parto vaginal independente do grupo de estudo. Participantes sintomáticos no momento da coleta, apresentaram maior abundância do gênero Ruminoclostridium em relação aos indivíduos assintomático, independente do grupo de estudo. No grupo dos pacientes saudáveis, os participantes sintomáticos no momento da coleta possuíam nível maior do gênero Phascolarctobacterium. Quanto ao sexo, tempo de amamentação exclusiva e medicações utilizadas para tratamento da doença, não foram encontradas nenhuma diferença na microbiota entre os grupos. Concluímos, portanto, que pacientes com constipação intestinal funcional apresentaram maior abundância de Bifidobacterium, em relação ao grupo controle, tal achado não foi observado no grupo de intestino neurogênico / The human gastrointestinal microbiota is a complex ecosystem consisting of anaerobic microorganisms that play a key role in maintaining the health and physiological functions of the host. The present study aimed to characterize the intestinal microbiota of patients with functional constipation and patients with spina bifida and neurogenic gut and to compare them with healthy patients. A cross-sectional study included 25 children with functional constipation, 25 healthy patients and 14 patients with neurogenic gut and spina bifida. The molecular methodology was used to determine the profile of the intestinal microbiota. Total DNA from the faeces samples was extracted with the QIAamp DNA Stool®-QIAGEN kit and sequenced the 16S rRNA gene (MiSeq (Illumina)). The sequences obtained were processed in QUIIME. Data analysis was performed using descriptive statistics. The diversity and richness of the intestinal microbiota was evaluated by the Shannon, Simpson and Chao indices and the contribution of other variables (sex, exclusive breastfeeding time, use of medication to treat constipation, type of delivery and presence of symptoms in the sampling time) was obtained by multivariate analysis. Firmicutes was the most predominant phylum followed by the phylum Bacteroidetes in the three study groups. Bifidobacterium was more abundant in patients with functional constipation than in healthy ones. The phylum Tenericutes was more abundant in patients who were born by cesarean section compared to vaginal delivery independent of the study group. Symptomatic participants at the time of collection had greater abundance of the genus Ruminoclostridium in relation to the asymptomatic individuals, independent of the study group. In the group of healthy patients, the symptomatic participants at the time of collection had a higher level of the genus Phascolarctobacterium. Regarding sex, exclusive breastfeeding time and medications used to treat the disease, no difference was found in the microbiota between the groups. We conclude, therefore, that patients with functional intestinal constipation had a greater abundance of Bifidobacterium, in relation to the control group, such finding was not observed in the group of neurogenic intestine.

I dag föds färre barn med ryggmärgsbråck på grund av att skadan kan upptäckas med fosterdiagnostik. Kunskapen om ryggmärgbråck utanför specialistklinikerna är bristande och kommunikationsproblemen mellan vårdpersonal och föräldrar är inte ovanligt. Det symtom som mest påverkar vardagen hos den som har ryggmärgsbråck är blåsrubbning.Syftet är att beskriva upplevelser av vara förälder till ungdomar och unga vuxna födda med ryggmärgsbråck, och hur ungdomen och den unge vuxne själv upplever att leva med skadan.Vi har använt oss av en kvalitativ metod och resultatet bygger framförallt på vetenskapliga artiklar och avhandlingar. Materialet analyserades med hjälp av Evans (2003) analysmodell. Resultatet visar att föräldrarna upplever olika sorters oro under barnets uppväxt och att det ofta förekommer brister i samarbetet mellan föräldrar och vårdpersonal. I resultatet framkommer att ungdomarna inte upplever sig som annorlunda utan det är snarare omgivningen som påminner dem om deras funktionsnedsättning. Ryggmärgsbråcket kan dock påverka det dagliga livet i större eller mindre utsträckning. I diskussionen diskuteras först metodval. Vi valde att diskutera dagens fosterdiagnostik, och vilka signaler det sänder ut till samhället. Vi diskuterar om det bristande samarbetet mellan föräldrar och vårdpersonal. Vi tar upp föräldrarnas oro och ungdomars upplevelser av sin funktionsnedsättning och kopplar det till begreppet subjektiv kropp. / <p>Program: Sjuksköterskeutbildning</p><p>Uppsatsnivå: C</p>