Jasneek K Chawla, Emma Cooke, Maria Carmen Miguel, Scott Burgess, Sally Staton
{"title":"父母养育患有唐氏综合症和睡眠困难的孩子的经历。","authors":"Jasneek K Chawla, Emma Cooke, Maria Carmen Miguel, Scott Burgess, Sally Staton","doi":"10.1080/15402002.2022.2143359","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>Sleep disorders are prevalent in children with Down Syndrome (DS). However, sleep treatment is not always readily accessed by this group. This study aims to understand families' experiences of having a child with DS and sleep difficulties, and in particular, their healthcare experiences, with the goal of informing practice improvements.</p><p><strong>Methods: </strong>We conducted semi-structured interviews with 34 parents (fathers n = 4 and mothers n = 30) with open-ended questions about parents' experiences of sleep, family dynamics, and healthcare. We operationalized a reflexive Thematic Analysis.</p><p><strong>Results: </strong>Parents normalized their experiences of having a child with DS and sleep problems. Parents acknowledged that sleep disruption has adverse and pervasive impacts on their wellbeing and family dynamics, but also found this difficult to identify as a health problem. They accepted sleep difficulties as a regular part of bringing up any child, particularly one with a disability. When they did seek treatment for their child's sleep difficulties, parents often reported encountering insensitive and inadequate care and described that, at times, healthcare professionals also normalized children's sleep difficulties, resulting in sub-optimal treatment. This included at times failure to refer to tertiary sleep medicine services when required.</p><p><strong>Conclusions: </strong>Parents' and healthcare professionals' normalization of sleeping difficulties denies that they are both deleterious and modifiable. Practice implications include raising healthcare professionals' awareness of the importance of proactively addressing sleep, with sensitivity to families' normalization strategies, recognizing that families may require prompting to report concerns.</p>","PeriodicalId":55393,"journal":{"name":"Behavioral Sleep Medicine","volume":"21 5","pages":"570-584"},"PeriodicalIF":2.2000,"publicationDate":"2023-09-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"2","resultStr":"{\"title\":\"Parents' Experiences of Having a Child with Down Syndrome and Sleep Difficulties.\",\"authors\":\"Jasneek K Chawla, Emma Cooke, Maria Carmen Miguel, Scott Burgess, Sally Staton\",\"doi\":\"10.1080/15402002.2022.2143359\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objectives: </strong>Sleep disorders are prevalent in children with Down Syndrome (DS). However, sleep treatment is not always readily accessed by this group. This study aims to understand families' experiences of having a child with DS and sleep difficulties, and in particular, their healthcare experiences, with the goal of informing practice improvements.</p><p><strong>Methods: </strong>We conducted semi-structured interviews with 34 parents (fathers n = 4 and mothers n = 30) with open-ended questions about parents' experiences of sleep, family dynamics, and healthcare. We operationalized a reflexive Thematic Analysis.</p><p><strong>Results: </strong>Parents normalized their experiences of having a child with DS and sleep problems. Parents acknowledged that sleep disruption has adverse and pervasive impacts on their wellbeing and family dynamics, but also found this difficult to identify as a health problem. They accepted sleep difficulties as a regular part of bringing up any child, particularly one with a disability. When they did seek treatment for their child's sleep difficulties, parents often reported encountering insensitive and inadequate care and described that, at times, healthcare professionals also normalized children's sleep difficulties, resulting in sub-optimal treatment. This included at times failure to refer to tertiary sleep medicine services when required.</p><p><strong>Conclusions: </strong>Parents' and healthcare professionals' normalization of sleeping difficulties denies that they are both deleterious and modifiable. Practice implications include raising healthcare professionals' awareness of the importance of proactively addressing sleep, with sensitivity to families' normalization strategies, recognizing that families may require prompting to report concerns.</p>\",\"PeriodicalId\":55393,\"journal\":{\"name\":\"Behavioral Sleep Medicine\",\"volume\":\"21 5\",\"pages\":\"570-584\"},\"PeriodicalIF\":2.2000,\"publicationDate\":\"2023-09-03\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"2\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Behavioral Sleep Medicine\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1080/15402002.2022.2143359\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Behavioral Sleep Medicine","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1080/15402002.2022.2143359","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
Parents' Experiences of Having a Child with Down Syndrome and Sleep Difficulties.
Objectives: Sleep disorders are prevalent in children with Down Syndrome (DS). However, sleep treatment is not always readily accessed by this group. This study aims to understand families' experiences of having a child with DS and sleep difficulties, and in particular, their healthcare experiences, with the goal of informing practice improvements.
Methods: We conducted semi-structured interviews with 34 parents (fathers n = 4 and mothers n = 30) with open-ended questions about parents' experiences of sleep, family dynamics, and healthcare. We operationalized a reflexive Thematic Analysis.
Results: Parents normalized their experiences of having a child with DS and sleep problems. Parents acknowledged that sleep disruption has adverse and pervasive impacts on their wellbeing and family dynamics, but also found this difficult to identify as a health problem. They accepted sleep difficulties as a regular part of bringing up any child, particularly one with a disability. When they did seek treatment for their child's sleep difficulties, parents often reported encountering insensitive and inadequate care and described that, at times, healthcare professionals also normalized children's sleep difficulties, resulting in sub-optimal treatment. This included at times failure to refer to tertiary sleep medicine services when required.
Conclusions: Parents' and healthcare professionals' normalization of sleeping difficulties denies that they are both deleterious and modifiable. Practice implications include raising healthcare professionals' awareness of the importance of proactively addressing sleep, with sensitivity to families' normalization strategies, recognizing that families may require prompting to report concerns.
期刊介绍:
Behavioral Sleep Medicine addresses behavioral dimensions of normal and abnormal sleep mechanisms and the prevention, assessment, and treatment of sleep disorders and associated behavioral and emotional problems. Standards for interventions acceptable to this journal are guided by established principles of behavior change. Intending to serve as the intellectual home for the application of behavioral/cognitive science to the study of normal and disordered sleep, the journal paints a broad stroke across the behavioral sleep medicine landscape. Its content includes scholarly investigation of such areas as normal sleep experience, insomnia, the relation of daytime functioning to sleep, parasomnias, circadian rhythm disorders, treatment adherence, pediatrics, and geriatrics. Multidisciplinary approaches are particularly welcome. The journal’ domain encompasses human basic, applied, and clinical outcome research. Behavioral Sleep Medicine also embraces methodological diversity, spanning innovative case studies, quasi-experimentation, randomized trials, epidemiology, and critical reviews.