Working parents of children with chronic illness/disability: narratives of concern

This paper reports some initial findings of an exploratory, qualitative study of the life and work of people who are, concurrently, parents of a child with chronic illness/disability and working full time. The respondents of this study happen to be all women. Two emerging themes of interest are explored here. The first is a revisit of traditional notions of the abusive workplace, which seems to be of special interest when considering the plight of these women. Secondly, the numerous work and home demands on the working mother, especially the working mother of a child with chronic illness or disability. [twas unsurprising that these women reported extensive and multiple physical and emotional demands while trying to manage full time work with significant home and caring responsibilities. What is surprising is that these narratives of concern have not previously been explored, and should be.

Support for parents of children with anorexia : what parents want

Parents' encounters with health professionals can influence their ability to cope with having a daughter with anorexia nervosa. Using qualitative analysis of in-depth interviews with 24 parents, we examine the question “What support do parents of teenage girls with anorexia want from clinicians?” The analysis shows that parents wanted clinicians to include them in treatment, support and guide them in their daughters' care, and demonstrate positive attitudes toward them. The implications for clinicians are discussed, including being sensitive to parents' vulnerability, ensuring congruence between clinicians' and parents' expectations about treatment, and strengthening formal channels of communication.

What's missing in missing data? Omissions in survey responses among parents of children with advanced cancer

Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. Objective: To describe patterns of missing data in the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) study, and highlight challenges in asking sensitive research questions. Design: Cross-sectional, survey-based study embedded within a randomized controlled trial. Setting: Three large children's hospitals: Dana-Farber/Boston Children's Cancer and Blood Disorders Center (DF/BCCDC); Children's Hospital of Philadelphia (CHOP); and Seattle Children's Hospital (SCH). Measurements: At the time of their child's enrollment, parents completed the Survey about Caring for Children with Cancer (SCCC), including demographics, perceptions of prognosis, treatment goals, quality of life, and psychological distress. Results: Eighty-six of 104 parents completed surveys (83% response). The proportion of missing data varied by question type. While 14 parents (16%) left demographic fields blank, over half (n=48; 56%) declined to answer at least one question about their child's prognosis, especially life expectancy. The presence of missing data was unrelated to the child's diagnosis, time from progression, time to death, or parent distress (p>0.3 for each). Written explanations in survey margins suggested that addressing a child's life expectancy is particularly challenging for parents. Conclusions and Relevance: Parents of children with cancer commonly refrain from answering questions about their child's prognosis, however, they may be more likely to address general cure likelihood than explicit life expectancy. Understanding acceptability of sensitive questions in survey-based research will foster higher quality palliative care research. © Copyright 2014, Mary Ann Liebert, Inc. 2014.

Competencies Needed By Mental Health Professionals Working With Parents of Children With Asthma

This paper describes clinical competencies necessary for mental health professionals working with parents of children with Asthma. Seven highly accomplished mental health clinicians from the Pediatric Behavioral Health Department at the nationally ranked hospital, National Jewish Health in Denver, Colorado were interviewed about the competencies they feel are needed to work with this specific population. The results of these interviews are organized into knowledge, skills and attitudes. Recommendations for other mental health providers are provided.

Guidelines for the alternate assessment of children with disabilities /

Contains the IDEA amendments of 1997 related to alternate assessment and the Illinois State Board of Education's guidelines regarding the alternate assessment of the educational progress of students with disabilities in Illinois school districts.

Overcoming barriers to inclusion of children with disabilities in the local schools : a blueprint for change :executive summary: /

Cover title.

Quality of life, stress and mental health in parents of children with parentally diagnosed food allergy compared to medically diagnosed and healthy controls

Background. Food allergy is related to poorer quality of life (QoL) and mental health of caregivers. Many parents diagnose food allergy in their child without seeking medical care and there is limited research on this group. This study investigated parental QoL and mental health in parents of children with parent-diagnosed food allergy (PA), medically diagnosed food allergy (MA), and a control group with no allergy (NA). Methods. One hundred and fifty parents from a general population completed validated measures of QoL, anxiety, depression, and stress. Results. Parents of children with food allergy (PA or MA) reported higher stress, anxiety, and depression than the control group (all ). Parents of children with MA reported poorer food allergy related QoL compared to parents of children with PA (); parents of children with PA reported poorer general QoL compared to parents of children with MA (). Conclusion. Parents of children with food allergy have significantly poorer mental health compared to healthy controls, irrespective of whether food allergy is medically diagnosed or not. It is important to encourage parents to have their child medically tested for food allergy and to recognise and refer for psychological support where needed.

TEACHERS’ ATTITUDES TOWARD INCLUSION OF CHILDREN WITH DISABILITIES IN RURAL EL SALVADOR

The attitude of school teachers toward inclusion of children with disabilities is an important factor in the successful implementation of a national inclusion program. With the universal pressure to provide education for all and international recognition of the importance of meeting the needs of diverse populations, inclusive education has become important to governments around the world. El Salvador’s Ministry of Education seeks to establish inclusion as an integral part of their struggle to meet the needs of children across the country, but this is a difficult process, especially for a country with limited resources which still struggles to meet international expectations of educational access and quality. Teacher attitude is an important factor in the success of inclusion programs and can be investigated in relation to various factors which may affect teachers’ classroom practice. While these factors have been investigated in multiple countries, there is a need for more knowledge of the present situation in developing countries and especially in schools across the rural areas of El Salvador to meet the needs of the diverse learners in that country. My research was a mixed methods case study of the rural schools of one municipality, using a published survey and interviews with teachers to investigate their attitudes regarding inclusion. This research was the first investigation of teachers’ attitudes toward inclusion in rural El Salvador and explored the needs and challenges which exist in creating inclusive schools across this country. The findings of this study revealed the following important themes. Some children with disabilities are not in school and those with mild disabilities are not always getting needed services. Teachers agreed with the philosophy of inclusion, but believed that some children with disabilities would receive a better education in special schools. They were not concerned about classroom management. Teachers desired more training on disability and inclusion. They believed that a lack of resources, including materials and personnel, was a major barrier to inclusion. Teachers’ attitudes were consistent regardless of family and professional experience with disability or amount of inclusion training. They were concerned about the role of family support for children with disabilities.

Family adaptation and perception of stress in parents of children with hemophilia. Possible factor influencing adherence

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Traumatic stress in parents of children with autism spectrum disorder.

A traumatic stress framework was identified as a valid way of conceptualising high levels of parenting stress in a subpopulation of parents raising a child with autism. An association between traumatic stress symptoms and child behaviours that posed a threat to child safety (e.g., elopement, aggression, self-injury) was found.

Tumor talk and child-well being: perceptions of 'good' and 'bad' news among parents of children with advanced cancer

CONTEXT: Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition.

OBJECTIVE: To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer from parent perspectives.

METHODS: Parents of children with advanced cancer cared for at three children's hospitals were asked to share details of conversations in the preceding 3 months that contained "good news" or "bad news" related to their child's medical condition. We used mixed methods to evaluate parent responses to both open-ended and fixed response items.

RESULTS: Of 104 enrolled parents, 86 (83%) completed the survey. Six (7%) parents reported discussing neither good nor bad news, 18 (21%) reported only bad news, 15 (17%) reported only good news, and 46 (54%) reported both good and bad news (1 missing response). Seventy-six parents (88%) answered free response items. Descriptions of both good and bad news discussions consisted predominantly of "tumor talk" or cancer control. Additional treatment options featured prominently, particularly in discussions of bad news (42%). Child well-being, an important good news theme, encompassed treatment tolerance, symptom reduction, and quality of life.

CONCLUSION: A majority of parents of children with advanced cancer report discussing both good and bad news in the preceding 3 months. While news related primarily to cancer control, parents also describe good news discussions related to their child's well-being. Understanding how parents of children with advanced cancer classify and describe the news they receive may enhance efforts to promote family-centered communication.

Minding the Gap: Children with Disabilities and the United Nations Convention on the Rights of Persons with Disabilities

This chapter provides a critical assessment of the approach adopted by the United Nations Convention on the Rights of Persons with Disabilities (CRPD) towards children with disabilities and its implications for socializing States Parties to both ‘right’ and ‘rights’ behaviour. It discusses the ways in which ‘rights talk’ for children with disabilities, itself a relatively recent development in this context, has been predominantly needs based in its substantive content, and explores whether the exacerbated disadvantage experienced by children with disabilities as a result of the particular interaction between disability and childhood is effectively addressed and given due weight by the new Convention. The CRPD's provisions are discussed in the context of children with disabilities and their potential to provide effective redress assessed. The chapter concludes with some critical reflections on the extent to which the CRPD can really be understood as minding the gap for children with disabilities.

Affective disorder in the parents of a clinic sample of children with anxiety disorders

Background: Family history studies in adults reveal strong familiality for the anxiety disorders with some specificity. The aim of the current study was to establish whether there was an elevated rate of anxiety disorders in the parents of children with anxiety disorders, and whether there was intergenerational specificity in the form of disorder. Methods: The mental state of a clinic sample of 85 children with anxiety disorder and their parents was systematically assessed, together with a comparison sample of 45 children with no current disorder and their parents. Results: Compared to the rate of anxiety disorder amongst parents of comparison children, the rate of current anxiety disorder in mothers of anxious children was significantly raised, as was the lifetime rate of anxiety disorder for both mothers and fathers. The mothers of children with generalised anxiety disorder, social phobia, specific phobia and separation anxiety disorder all had raised lifetime rates of the corresponding disorder, but also raised rates of others disorders. Limitations: Only 60% of the fathers of the anxious children were assessed. Conclusions: Strong familiality of anxiety disorders was confirmed, especially between child and maternal anxiety disorder. All child anxiety disorders were associated with several forms of anxiety disorder in the mother. Some specificity in the form of anxiety disorder in the child and the mother was apparent for social phobia and separation anxiety disorder. The findings have implications for the management of child anxiety. (c) 2006 Elsevier B.V. All rights reserved.