Muniba Mehmood, Jamshed Akhtar, Naima Zamir, Mohsina Noor Ibrahim
{"title":"先天性肾上腺增生女孩的父母所面临的生活质量、感知耻辱和挑战。","authors":"Muniba Mehmood, Jamshed Akhtar, Naima Zamir, Mohsina Noor Ibrahim","doi":"10.29271/jcpsp.2024.12.1468","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>To assess the quality of life (QoL), perceived stigma, and extent of anxiety and/or depression among parents of female children with congenital adrenal hyperplasia (CAH).</p><p><strong>Study design: </strong>Observational cross-sectional study. Place and Duration of the Study: Department of Paediatric Surgery and Endocrinology Clinics of National Institute of Child Health (NICH), Karachi, Pakistan, from June to December 2022.</p><p><strong>Methodology: </strong>Parents of the female children diagnosed with CAH were enrolled. A validated parent self-report questionnaire, parent- focused items of the experiences and reactions questionnaire used for assessing disorders of sex development (DSD)-related experienced or anticipated stigma and the patient health questionnaire-4 (PHQ-4) were used to gather the information. The scores were calculated for each item and compared among mothers and fathers. Independent samples student t-test was used to find any significant differences between the mean scores. A value of p <0.05 was considered statistically significant.</p><p><strong>Results: </strong>Out of the 98 parents, there were 74 (75.5%) mothers and 24 (24.5%) fathers. The score recorded in all three tools showed multiple challenges that had a negative impact on parents. In QoL assessment for experiences and reactions, scores between mothers and fathers were similar. In the PHQ-4 tool, the scores were significantly related to the female gender of the parents as anxiety and depression were more reported in mothers (p = 0.046). In parents of children >7 years of age, the differences in scores were statistically significant for the domains such as talking to others, and stigma.</p><p><strong>Conclusion: </strong>The parental QoL was affected resulting in limited social interactions with the feeling of being stigmatised. Many reported significant anxiety and/or depression.</p><p><strong>Key words: </strong>Parental anxiety, Congenital adrenal hyperplasia, Disorders of sex development, Gender assignment, Gender.</p>","PeriodicalId":94116,"journal":{"name":"Journal of the College of Physicians and Surgeons--Pakistan : JCPSP","volume":"34 12","pages":"1468-1472"},"PeriodicalIF":0.0000,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Quality of Life, Perceived Stigma, and Challenges Faced by the Parents of Girls with Congenital Adrenal Hyperplasia.\",\"authors\":\"Muniba Mehmood, Jamshed Akhtar, Naima Zamir, Mohsina Noor Ibrahim\",\"doi\":\"10.29271/jcpsp.2024.12.1468\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objective: </strong>To assess the quality of life (QoL), perceived stigma, and extent of anxiety and/or depression among parents of female children with congenital adrenal hyperplasia (CAH).</p><p><strong>Study design: </strong>Observational cross-sectional study. Place and Duration of the Study: Department of Paediatric Surgery and Endocrinology Clinics of National Institute of Child Health (NICH), Karachi, Pakistan, from June to December 2022.</p><p><strong>Methodology: </strong>Parents of the female children diagnosed with CAH were enrolled. A validated parent self-report questionnaire, parent- focused items of the experiences and reactions questionnaire used for assessing disorders of sex development (DSD)-related experienced or anticipated stigma and the patient health questionnaire-4 (PHQ-4) were used to gather the information. The scores were calculated for each item and compared among mothers and fathers. Independent samples student t-test was used to find any significant differences between the mean scores. A value of p <0.05 was considered statistically significant.</p><p><strong>Results: </strong>Out of the 98 parents, there were 74 (75.5%) mothers and 24 (24.5%) fathers. The score recorded in all three tools showed multiple challenges that had a negative impact on parents. In QoL assessment for experiences and reactions, scores between mothers and fathers were similar. In the PHQ-4 tool, the scores were significantly related to the female gender of the parents as anxiety and depression were more reported in mothers (p = 0.046). In parents of children >7 years of age, the differences in scores were statistically significant for the domains such as talking to others, and stigma.</p><p><strong>Conclusion: </strong>The parental QoL was affected resulting in limited social interactions with the feeling of being stigmatised. Many reported significant anxiety and/or depression.</p><p><strong>Key words: </strong>Parental anxiety, Congenital adrenal hyperplasia, Disorders of sex development, Gender assignment, Gender.</p>\",\"PeriodicalId\":94116,\"journal\":{\"name\":\"Journal of the College of Physicians and Surgeons--Pakistan : JCPSP\",\"volume\":\"34 12\",\"pages\":\"1468-1472\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2024-12-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of the College of Physicians and Surgeons--Pakistan : JCPSP\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.29271/jcpsp.2024.12.1468\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of the College of Physicians and Surgeons--Pakistan : JCPSP","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.29271/jcpsp.2024.12.1468","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
Quality of Life, Perceived Stigma, and Challenges Faced by the Parents of Girls with Congenital Adrenal Hyperplasia.
Objective: To assess the quality of life (QoL), perceived stigma, and extent of anxiety and/or depression among parents of female children with congenital adrenal hyperplasia (CAH).
Study design: Observational cross-sectional study. Place and Duration of the Study: Department of Paediatric Surgery and Endocrinology Clinics of National Institute of Child Health (NICH), Karachi, Pakistan, from June to December 2022.
Methodology: Parents of the female children diagnosed with CAH were enrolled. A validated parent self-report questionnaire, parent- focused items of the experiences and reactions questionnaire used for assessing disorders of sex development (DSD)-related experienced or anticipated stigma and the patient health questionnaire-4 (PHQ-4) were used to gather the information. The scores were calculated for each item and compared among mothers and fathers. Independent samples student t-test was used to find any significant differences between the mean scores. A value of p <0.05 was considered statistically significant.
Results: Out of the 98 parents, there were 74 (75.5%) mothers and 24 (24.5%) fathers. The score recorded in all three tools showed multiple challenges that had a negative impact on parents. In QoL assessment for experiences and reactions, scores between mothers and fathers were similar. In the PHQ-4 tool, the scores were significantly related to the female gender of the parents as anxiety and depression were more reported in mothers (p = 0.046). In parents of children >7 years of age, the differences in scores were statistically significant for the domains such as talking to others, and stigma.
Conclusion: The parental QoL was affected resulting in limited social interactions with the feeling of being stigmatised. Many reported significant anxiety and/or depression.
Key words: Parental anxiety, Congenital adrenal hyperplasia, Disorders of sex development, Gender assignment, Gender.
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