Sascha E. Swanson, Sasja N. Duijff, Linda E. Campbell
{"title":"Care4Parents：针对 22q11.2 缺失综合征患儿照顾者的在线心智养育计划评估","authors":"Sascha E. Swanson, Sasja N. Duijff, Linda E. Campbell","doi":"10.1007/s41252-023-00389-4","DOIUrl":null,"url":null,"abstract":"<div><h3>Objectives</h3><p>Parenting a child with special healthcare needs is associated with significant caregiver stress. Previous research has found that parenting stress and mental health impact outcomes for children with chronic illnesses. Despite this, the importance of managing parents’ stress is often overlooked in the management of chronic health conditions, such as 22q11.2 deletion syndrome (22q11DS). The objective of this study was to investigate the acceptability of the mindful parenting program, Care4Parents.</p><h3>Methods</h3><p>This study was designed as a non-randomised pilot study evaluating the acceptability of an online mindful parenting program Care4Parents, specifically designed for those parenting a child with special health care needs, including medical complexity. There were 20 participants recruited to take part, which involved attending eight online weekly group sessions for 2 h, with a follow-up after 2 months and practice exercises between sessions. Interviews were conducted with 12 participants after the completion of the program. Using attendance data and thematic analysis of semi-structured interviews, the study aimed to determine if the online program Care4Parents would be experienced by participants as acceptable.</p><h3>Results</h3><p>Results indicate preliminary evidence of acceptability, with adequate retention and themes emerging from interviews highlighting the appropriateness of content, delivery, and perceived benefits, including personal growth, peer support, and enhanced coping. ‘Barriers to engagement’ was also a theme, and adjustments were discussed based on participant feedback to further enhance the program.</p><h3>Conclusions</h3><p>The analysis of the data indicates that the program was deemed acceptable to participants, therefore warranting further research using quantitative measures to confirm findings and investigate effectiveness.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"9 2","pages":"195 - 212"},"PeriodicalIF":1.5000,"publicationDate":"2024-01-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-023-00389-4.pdf","citationCount":"0","resultStr":"{\"title\":\"Care4Parents: An Evaluation of an Online Mindful Parenting Program for Caregivers of Children with 22q11.2 Deletion Syndrome\",\"authors\":\"Sascha E. Swanson, Sasja N. Duijff, Linda E. Campbell\",\"doi\":\"10.1007/s41252-023-00389-4\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Objectives</h3><p>Parenting a child with special healthcare needs is associated with significant caregiver stress. Previous research has found that parenting stress and mental health impact outcomes for children with chronic illnesses. Despite this, the importance of managing parents’ stress is often overlooked in the management of chronic health conditions, such as 22q11.2 deletion syndrome (22q11DS). The objective of this study was to investigate the acceptability of the mindful parenting program, Care4Parents.</p><h3>Methods</h3><p>This study was designed as a non-randomised pilot study evaluating the acceptability of an online mindful parenting program Care4Parents, specifically designed for those parenting a child with special health care needs, including medical complexity. There were 20 participants recruited to take part, which involved attending eight online weekly group sessions for 2 h, with a follow-up after 2 months and practice exercises between sessions. Interviews were conducted with 12 participants after the completion of the program. Using attendance data and thematic analysis of semi-structured interviews, the study aimed to determine if the online program Care4Parents would be experienced by participants as acceptable.</p><h3>Results</h3><p>Results indicate preliminary evidence of acceptability, with adequate retention and themes emerging from interviews highlighting the appropriateness of content, delivery, and perceived benefits, including personal growth, peer support, and enhanced coping. ‘Barriers to engagement’ was also a theme, and adjustments were discussed based on participant feedback to further enhance the program.</p><h3>Conclusions</h3><p>The analysis of the data indicates that the program was deemed acceptable to participants, therefore warranting further research using quantitative measures to confirm findings and investigate effectiveness.</p></div>\",\"PeriodicalId\":36163,\"journal\":{\"name\":\"Advances in Neurodevelopmental Disorders\",\"volume\":\"9 2\",\"pages\":\"195 - 212\"},\"PeriodicalIF\":1.5000,\"publicationDate\":\"2024-01-12\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://link.springer.com/content/pdf/10.1007/s41252-023-00389-4.pdf\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Advances in Neurodevelopmental Disorders\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://link.springer.com/article/10.1007/s41252-023-00389-4\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"EDUCATION, SPECIAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Advances in Neurodevelopmental Disorders","FirstCategoryId":"1085","ListUrlMain":"https://link.springer.com/article/10.1007/s41252-023-00389-4","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"EDUCATION, SPECIAL","Score":null,"Total":0}
Care4Parents: An Evaluation of an Online Mindful Parenting Program for Caregivers of Children with 22q11.2 Deletion Syndrome
Objectives
Parenting a child with special healthcare needs is associated with significant caregiver stress. Previous research has found that parenting stress and mental health impact outcomes for children with chronic illnesses. Despite this, the importance of managing parents’ stress is often overlooked in the management of chronic health conditions, such as 22q11.2 deletion syndrome (22q11DS). The objective of this study was to investigate the acceptability of the mindful parenting program, Care4Parents.
Methods
This study was designed as a non-randomised pilot study evaluating the acceptability of an online mindful parenting program Care4Parents, specifically designed for those parenting a child with special health care needs, including medical complexity. There were 20 participants recruited to take part, which involved attending eight online weekly group sessions for 2 h, with a follow-up after 2 months and practice exercises between sessions. Interviews were conducted with 12 participants after the completion of the program. Using attendance data and thematic analysis of semi-structured interviews, the study aimed to determine if the online program Care4Parents would be experienced by participants as acceptable.
Results
Results indicate preliminary evidence of acceptability, with adequate retention and themes emerging from interviews highlighting the appropriateness of content, delivery, and perceived benefits, including personal growth, peer support, and enhanced coping. ‘Barriers to engagement’ was also a theme, and adjustments were discussed based on participant feedback to further enhance the program.
Conclusions
The analysis of the data indicates that the program was deemed acceptable to participants, therefore warranting further research using quantitative measures to confirm findings and investigate effectiveness.
期刊介绍：
Advances in Neurodevelopmental Disorders publishes high-quality research in the broad area of neurodevelopmental disorders across the lifespan. Study participants may include individuals with:Intellectual and developmental disabilitiesGlobal developmental delayCommunication disordersLanguage disordersSpeech sound disordersChildhood-onset fluency disorders (e.g., stuttering)Social (e.g., pragmatic) communication disordersUnspecified communication disordersAutism spectrum disorder (ASD)Attention-deficit/hyperactivity disorder (ADHD), specified and unspecifiedSpecific learning disordersMotor disordersDevelopmental coordination disordersStereotypic movement disorderTic disorders, specified and unspecifiedOther neurodevelopmental disorders, specified and unspecifiedPapers may also include studies of participants with neurodegenerative disorders that lead to a decline in intellectual functioning, including Alzheimer’s disease, amyotrophic lateral sclerosis, Creutzfeldt-Jakob disease, vascular dementia, Lewy body dementia, frontotemporal dementia, corticobasal degeneration, Huntington’s disease, and progressive supranuclear palsy. The journal includes empirical, theoretical and review papers on a large variety of issues, populations, and domains, including but not limited to: diagnosis; incidence and prevalence; and educational, pharmacological, behavioral and cognitive behavioral, mindfulness, and psychosocial interventions across the life span. Animal models of basic research that inform the understanding and treatment of neurodevelopmental disorders are also welcomed. The journal is multidisciplinary and multi-theoretical, and encourages research from multiple specialties in the social sciences using quantitative and mixed-method research methodologies.
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