Resilience in families of children with <scp>D</scp>own syndrome in <scp>K</scp>orea

Choi, Eun Kyoung; Yoo, Il Young

doi:10.1111/ijn.12321

Cited by 41 publications

(68 citation statements)

References 26 publications

(52 reference statements)

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“…Only four studies identified their guiding framework; two used family frameworks, the Resiliency model (Hsiao & Van Riper , Choi & Van Riper ) and Patterson's family resilience model (Choi & Yoo ) and one used an individual‐centric framework, the stress and coping model (Lam & Mackenzie ). Two studies were comparative (Cheng & Tang , Gau et al .…”

Section: Resultsmentioning

confidence: 99%

“…While only one level of adaptation was assessed in most studies, (Cheng & Tang , Choi et al . , Choi & Van Riper , Hsiao ), two levels were assessed in two studies (Hsiao & Van Riper , Choi & Yoo ) and all three levels (individual, dyadic and family) were assessed in two studies (Chiu et al . , Gau et al .…”

Section: Resultsmentioning

confidence: 99%

“…In addition, in three studies a power analysis was used to justify the sample size (Choi et al . , Hsiao & Van Riper , Hsiao , Choi & Yoo ). Most studies used convenience sampling.…”

Section: Resultsmentioning

confidence: 99%

“…, Hsiao & Van Riper , Hsiao , Kuo ) and three in Korea (Choi et al . , Choi & Van Riper , Choi & Yoo ).…”

Section: The Reviewmentioning

confidence: 99%

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Adaptation in families of children with Down syndrome in East Asian countries: an integrative review

Choi

Riper

2017

Journal of Advanced Nursing

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Adaptation in families of children with Down syndrome in East Asian countries: an integrative review

Choi

Riper

2017

Journal of Advanced Nursing

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“…27 Furthermore, according to cultural differences, Korean parents take full responsibility for their child's care because support programs for children with chronic condition in Korea are still very limited. 28 For this reason, they seem to be more overprotective of their child and it led to be more proactive in the bowel management of their children comparing with adult/elderly population. It was essential that a designated specialized nurse practitioner provides structured follow-up of the children.…”

Section: Resultsmentioning

confidence: 99%

Long-term outcome of transanal irrigation for children with spina bifida

et al. 2014

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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...

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Family adaptation in families of individuals with Down syndrome from 12 countries

Van Riper,

Knafl,

Knafl

et al. 2023

American J of Med Genetics Pt C

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Our current understanding of adaptation in families of individuals with Down syndrome (DS) is based primarily on findings from studies focused on participants from a single country. Guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, the purpose of this cross‐country investigation, which is part of a larger, mixed methods study, was twofold: (1) to compare family adaptation in 12 countries, and (2) to examine the relationships between family variables and family adaptation. The focus of this study is data collected in the 12 countries where at least 30 parents completed the survey. Descriptive statistics were generated, and mean family adaptation was modeled in terms of each predictor independently, controlling for an effect on covariates. A parsimonious composite model for mean family adaptation was adaptively generated. While there were cross‐country differences, standardized family adaptation mean scores fell within the average range for all 12 countries. Key components of the guiding framework (i.e., family demands, family appraisal, family resources, and family problem‐solving communication) were important predictors of family adaptation. More cross‐country studies, as well as longitudinal studies, are needed to fully understand how culture and social determinants of health influence family adaptation in families of individuals with DS.

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Resilience in families of children with Down syndrome in Korea

Cited by 41 publications

References 26 publications

Adaptation in families of children with Down syndrome in East Asian countries: an integrative review

Adaptation in families of children with Down syndrome in East Asian countries: an integrative review

Long-term outcome of transanal irrigation for children with spina bifida

Family adaptation in families of individuals with Down syndrome from 12 countries

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