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This study aims to identify the factors related to resilience of the families of children with Down syndrome (DS). Data were collected from 126 parents of children with DS in Korea, using a self-administered questionnaire. The age of the child, developmental level of the child, parental depression, and stress and strain were negatively related with family adaptation, whereas health of parents, family cohesiveness, flexibility, communication skills, supportive family/relatives, and quality of community service were positively related. Parental depression, family cohesiveness and communication skills were the factors that were strongly related to family resilience and adaptation. It is suggested that nursing interventions to decrease parental depression and increase family cohesiveness and communication skills should be included to increase resilience of the families of children with DS.

Study design: Experimental, prospective study. Objectives: We evaluated the long-term clinical efficacy of transanal irrigation (TAI) and its effect on the quality of life of spina bifida children and their caregivers. Setting: Republic of Korea. Method: Forty-four spina bifida pediatric patients with constipation, fecal incontinence or both, underwent a TAI program at our spina bifida clinic between December 2010 and October 2013. The children and their caregivers were evaluated using a self-administered questionnaire before TAI and at 3 months and 3 years after initiation of the program. Results: Successful treatment outcome was achieved in 38 (86.4%) children after a mean follow-up duration of 33 months (range, 30-36). The mean number of fecal incontinence episodes per week, the number of diaper changes and the total time for bowel care per day before the program decreased at the latest follow-up examination from 7.3 to 0.4 (Po0.001), 1.6 to 0.2 (Po0.001) and 29.2 to 19.4 min (P = 0.038), respectively. These results remained constant from short-term follow-up at 3 months to 3 years. Caregivers and children could go out more often (P = 0.002), and the emotional impact of bowel care on caregivers decreased (Po0.001). The reported mean overall satisfaction with TAI was 8/10. The common adverse effect during TAI was abdominal discomfort (60.5%). Conclusion: We observed a sustained significant improvement in defecation symptoms and quality of life for 3 years in spina bifida children who underwent continuous TAI. INTRODUCTIONSpina bifida (SB) is a congenital impairment of neural tube closure that occurs between 24 and 26 days of gestation 1 and affects the lower spinal cord with variable severity of neural symptoms that include neurogenic bladder and bowel dysfunction. 2 Appropriate management often achieves urinary continence, but bowel continence is a major concern for patients with SB. 3 More than 50% of children and adolescents with SB do not achieve full bowel continence; 4 bowel dysfunction is a major obstacle to independence, activity, social integration and good quality of life (QoL). 5 For some children with SB, bowel dysfunction is more distressing compared with their impaired motor function. 6 Several methods are used to deal with constipation and fecal incontinence in children with SB, including conservative or pharmacological management, transanal irrigation (TAI) and surgical approaches. Different laxatives have been used with varying success; however, when the internal sphincter is not fully functional, fecal incontinence or soiling occurs. 1 Therefore, a more aggressive management approach is needed for bowel continence in many cases. The Malone antegrade continence enema procedure is one of the most useful techniques for resolving fecal incontinence in SB children, but the downside of this procedure is the necessity for surgery. 6 Therefore, conservative treatment should be first administered, and the efficacy of TAI may predict the efficacy of Malone antegrade continence enema on bowel manageme...

By providing positive information, healthcare providers can help parents to develop a more optimistic outlook on their children's future.