A Conceptual Model to Examine the Relationship Between the Health Status of School Age Children with Cystic Fibrosis and the Hassles Reported by These Children and Their Families PDF Download

Author: Joanne Adrian
Publisher:
ISBN:
Category : Chronically ill children
Languages : en
Pages : 352

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Author: Judith O'Haver
Publisher:
ISBN:
Category :
Languages : en
Pages : 338

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Book Description
When a child is diagnosed with a chronic life threatening illness there is a significant impact on the entire family. Siblings are at risk for psychological adaptation problems because of their unique relationship with the ill child and the effect of that illness on family functioning. Few studies have been reported which examine the impact of chronic life-threatening illnesses in children on healthy siblings. The purpose of this study was to investigate the predisposing risk and protective factors that affect the psychological adaptation of healthy siblings of a child with Cystic Fibrosis (CF). A descriptive study was conducted using a convenience sample from two CF centers. The relationship between several variables was explored using non- parametric correlations. In this sample, significant negative correlations were found between parental stress and their reported financial well being and emotional or behavioral problems in the well siblings prior to the diagnosis of CF was made in the sick sibling and perceived parental support. For adolescent siblings, The Behavioral Symptoms Index (BSI) was correlated to reported stress in their parents and negatively correlated to the parental perceived support. The Emotional Symptoms Index (ESI) was correlated to the BSI. A significant negative correlation was also noted between age and Internalizing Behaviors. These relationships were not significant for the child siblings in this sample. There were no significant relationships among gender, maternal education, and caretaker for the well sibling when the child with CF was hospitalized and their Internalizing and Externalizing Behaviors. The health care teams in these clinics seldom discussed CF with the well sibling. However, for the children in this study, there was a significant negative correlation with this discussion and their Externalizing Behaviors. Findings from this study suggest that the family environment, especially parental stress and perceived social support, may affect the adaptation of the well sibling. Adolescent siblings were more at risk for this environmental influence than their younger counterparts.

Author: Susan Kay Ellison Rice
Publisher:
ISBN:
Category :
Languages : en
Pages : 130

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Author: Lynn T. Staheli
Publisher: Cambridge University Press
ISBN: 9780521571067
Category : Medical
Languages : en
Pages : 302

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The term arthrogryposis describes a range of congenital contractures that lead to childhood deformities. It encompasses a number of syndromes and sporadic deformities that are rare individually but collectively are not uncommon. Yet, the existing medical literature on arthrogryposis is sparse and often confusing. The aim of this book is to provide individuals affected with arthrogryposis, their families, and health care professionals with a helpful guide to better understand the condition and its therapy. With this goal in mind, the editors have taken great care to ensure that the presentation of complex clinical information is at once scientifically accurate, patient oriented, and accessible to readers without a medical background. The book is authored primarily by members of the medical staff of the Arthrogryposis Clinic at Children's Hospital and Medical Center in Seattle, Washington, one of the leading teams in the management of the condition, and will be an invaluable resource for both health care professionals and families of affected individuals.

Author: Fiona Moola
Publisher:
ISBN:
Category :
Languages : en
Pages :

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Author: Renee Carol Burk
Publisher:
ISBN:
Category :
Languages : en
Pages : 312

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School-age children with Cystic Fibrosis (CF) possess valuable knowledge about themselves. They have experience and ability to offer insight about living with CF. Previous studies, exploring the perceptions of CF children, give little attention to eliciting and listening to their voices. Also, traditional data collection methods limit children from participating in research. The purpose of this study was to explore and describe how school-age children with CF see themselves in the world they live. The study utilized qualitative description methodology. Symbolic Interactionism served as the researchers philosophical lens. It is a perspective that seeks to understand the social world of others, as they perceive it. Photo elicitation was used as the primary data collection method. Each participant was asked to take photographs about. What it is like to be you. Photographs were then used to stimulate and guide an audio-recorded interview and make a photo book for the child to keep. Data were analyzed using Boyatzis method of inductive thematic content analysis. Sixteen children with CF between the ages of 8 to 11 were purposively recruited from the Southeastern United States. Data saturation was achieved after 13 interviews. Rigor was maintained by a variety of ways including bracketing, peer evaluation, and member checking. Five themes emerged from the data Me Being Me, My Medicine and Treatments, My Family, My Friends and Other Key Relationships, and My World. Findings revealed that life does not revolve around CF, but instead centers on me being me and living a normal life. Additionally, photo elicitation empowered participants to be authors of their own stories, and promoted communication between them and the researcher. In knowing the reality of children, nurses and other multidisciplinary CF team members are better equipped to design and plan interventions that are meaningful, beneficial, and satisfying to the child and his or her parent. The results of this study demonstrate children can be active participants in research and provides opportunities to transform nursing care by developing and evaluating strategies for the delivery of care to children with CF. Recommendations for future research include expanding this study to other CF centers and including the perceptions of parents, nurses, and other CF health care providers. Additionally, because perceptions a person holds about them selves and the world change overtime, a follow-up study when participants reach adolescence and adulthood is suggested.

Author: Virginia Moyer
Publisher: BMJ Books
ISBN: 9780727917461
Category : Medical
Languages : en
Pages : 544

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Book Description
Evidence Based Pediatrics and Child Health is a ground-breaking new text on pediatrics and child care management, using evidence based approach. It covers all the major childhood conditions and contains the features of both a handbook and a reference text. Each chapter combines both advice on management and how best to practice evidence based medicine with reviews of all the available evidence in a specific area. The goal of the book is to help pediatricians and others who care for children to provide the best possible care by combining the best, most current evidence with special circumstances of each individual patient.

Author: Nicole R. Wightman
Publisher:
ISBN:
Category : Health behavior in children
Languages : en
Pages : 81

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Book Description
Cystic Fibrosis (CF) is a fatal genetic disease that targets the respiratory and digestive systems and requires a multitude of daily treatments. The objective of the present study was to evaluate the relationship between children's and their parents' reported medical adherence with their health beliefs, using the Health Belief Model (HBM). Participants were 33 parent-children dyads from a Midwestern CF center. Participants completed questionnaires regarding their adherence to medical regimens and health beliefs related to adherence. The present study found that the HBM variables accounted for 50% of the variance in children's self-reported overall adherence and 38% of the variance in their parents' report of their child's overall adherence. When evaluating separate treatment components, the HBM variables were related to children's self-reported adherence to aerosols, aerosol antibiotics, and vitamins and their parents' report of their child's adherence to airway clearance, oral antibiotics, and vitamins. Significant differences were found in children's and parents' report of their health beliefs (i.e., susceptibility, severity, barriers). These data suggest that interventions to increase adherence should focus on children and their parents, individually, as well as by specific medical treatment.

Author: Heather Michelle Babyar
Publisher:
ISBN:
Category : Chronically ill children
Languages : en
Pages : 137

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The role of social media in the relationship between social support and adherence in children with cystic fibrosis Although person-to-person contact between CF patients is discouraged, the World Wide Web represents a relatively new source of health information and support available online. With this increased access to social networking sites, it is possible for young people with CF to seek out social support online as person-to-person contact is discouraged. The present study aims to examine the social network use of adolescent and young adults with CF regarding social support and explore how social network experiences/exposure affects health related behaviors. In order to describe how social support appears in the context of individuals' communications on CF social networking websites, we developed a detailed code sheet to capture relevant details of the message threads on a CF specific social networking group website. For remaining study hypotheses, we recruited 60 individuals with CF between the ages of 13-25 and parents (for those participants under the age of 18) for participation at Akron Children's Hospital CF clinic (30%) or through an online website link posted on CF specific social networking web pages (70%). Results of this study demonstrate that increased social support, especially from family members, contributes to IC adherence. These findings highlight the importance of providing interventions aimed at increasing family social support in order to improve adherence behaviors. Overall, this study is one of the first to investigate how individuals with CF make use of the social networking sites and how they incorporate information from these sites into their lives and complex medical and infection control adherence routines.

Author: Erin B. Booth
Publisher:
ISBN:
Category :
Languages : en
Pages :

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Cystic Fibrosis, a life threatening autosomal recessive genetic disease, is characterized by a defective gene resulting in the production of thick mucus that obstructs the lungs and pancreas. CF requires intensive management performed at the home. An initial pilot study was performed to describe knowledge of CF related diabetes (CFRD) in adults with CF. The findings of this study, which demonstrated that adults with CF lacked sufficient knowledge about CFRD confirmed the need to explore additional factors of self-management guided by a theoretical framework. The second study presented in this dissertation used the Individual and Family Self-Management Theory (IFSMT) to describe context (condition-specific and individual and family factors) and process (self-efficacy and knowledge) and outcome (family self-management) variables for caregivers of children with CF. It also compared differences in context, process, and outcomes in caregivers based on socioeconomic status (Medicaid vs. private insurance), and explored correlations among context, process, and outcomes. Participants for this cross-sectional descriptive study were caregivers of individuals with CF who were under the age of 18 and diagnosed with CF for at least 9 months. Participants completed a demographic survey and questionnaires that included measures of perceived disease severity (VAS), depression (Patient Health Questionnaire), self-efficacy (Perceived Health Competence Scale, Mountain West Cystic Fibrosis Consortium Questionnaire), knowledge (CF Knowledge and Attitudes Questionnaire), and self management behaviors (Self-Management Behaviors Questionnaire) Additional information was collected on the children with CF and included demographic information as well as height/weight/BMI, pulmonary function test results, medication profile, and insurance status. Participants in this study were primarily female caregivers with high self-efficacy, and average knowledge. The children with CF in this study had moderate treatment complexity and normal/mild impairment in lung function. Deficits were noted in the areas of caregivers' reproductive and genetic knowledge. This study found differences between Medicaid and private insurance groups related to knowledge. There were significant relationships between disease severity and CF specific self-efficacy and nutritional surveillance as well as general self-efficacy and respiratory surveillance. These findings confirmed that the IFM. S.T would provide a consistent framework to guide future studies aimed at identifying factors that influence self-management behaviors of CF in patients and their caregivers.