Factors Affecting Quality of Life of Children and Adolescents With Anorectal Malformations or Hirschsprung Disease

Congenital abnormalities in children are still quite high in Indonesia such as hirschsprung disease and anorectal malformations which require the fabrication of colostomy as bowel decompression and faecal expenditure alternatives. Stoma fabrication can have a physical or psychosocial impact on a child's life. This study aimed to determine the perception of parents on the quality of life in toddler-aged children with post colostomy. The method of this research was quantitative descriptive with 35 respondents obtained by consecutive sampling technique. The participants involved in this study were the parents of toddler-aged children who had experienced colostomy surgery. The data were collected using a Pediatric Quality of Life Inventory (Peds QL) questionnaire. The data were analyzed with descriptive statistics. The results showed that 19 people (54.28%) of toddler-aged children who had experienced colostomy surgery had poor quality of life with the lowest score on cognitive function. The conclusions of this study indicated that most of parents perceived the quality of life of toddler-aged children who had experinced colostomy surgery in the bad category. The poor quality of life can affect the child growth. One of the efforts to improve the quality of life of children is by providing psychological therapy to help children deal with negative emotions and providing psychoeducation to parents about the importance of providing stimulus in toddler-aged childern so that children can have a better quality of life.

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Short and long-term quality of life outcomes in children after surgery for Hirschsprung Disease or Anorectal Malformations: A systematic review and meta-analysis

10.31219/osf.io/zqbgx ◽

2020 ◽

Author(s):

Irina Oltean ◽

Emily Beveridge ◽

Lamia Hayawi ◽

Vid Bijelic ◽

Ahmed Nasr

Keyword(s):

Quality Of Life ◽

Systematic Review ◽

Psychosocial Functioning ◽

Meta Analysis ◽

Hirschsprung Disease ◽

Cochrane Collaboration ◽

Anorectal Malformations ◽

Case Control Studies ◽

Social And Emotional

There is paucity of evidence examining quality of life in children with HD and ARM prioritizing dimensions other than physical functioning, such as psychosocial functioning in a precise manner. As such, we have developed a systematic review protocol to narratively and quantitatively summarize the physical and psychosocial functioning of children affected by HD and ARM in hopes of addressing this limitation. The following databases were searched on Nov 5, 2019: MEDLINE including Epub Ahead of Print, In-Process & Other Non-Indexed Citations (1946 to October 25, 2019) and Embase (1947 to 2019 October 25) and the CENTRAL Trials Registry of the Cochrane Collaboration (September 2019 Issue) using the Ovid interface. Searches were limited to English, to journal articles, and articles published since 2006. This review will identify retrospective and prospective cohort studies, case-control studies, case studies with greater than 5 participants, and randomized-control trials where the quality of life (i.e., physical and/or social functioning) of children aged 0-18 years with either anorectal malformations or Hirschprung’s disease is reported by children or parent proxies. Understanding the quality of life of children affected by HD and ARM after surgery will help clinical practitioners, specifically surgeons, create tailored and comprehensive protocols for managing these diseases while recognising the physical, social, and emotional toll they can inflict on children.

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