The Lived Experience of Mothers Caring for an Adolescent Or Young Adult with Severe Cerebral Palsy PDF Download
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Author: Agnes M. Burkhard
Publisher:
ISBN:
Category : Cerebral palsied
Languages : en
Pages : 246
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Book Description
Cerebral palsy is one of the most common causes of childhood disability, and a major cause of severe disability in children. Mothers of adolescents and young adults with severe CP often assume a role exceeding the usual normative activities of parenting in relation to the intensity, complexity, and temporal nature of the family caregiving experience. The aim of this phenomenologic inquiry was to explore the lived experience of maternal caregiving as experienced by mothers caring for adolescents and young adults with severe CP. Furthermore, the study sought to examine the essential aspects of this human experience using the phenomenological contextual processing and analysis method proposed by van Manen (1990). Eleven mothers were interviewed using a semi-structured interview format. One overarching theme, A Different Life, and four inter-related essential themes emerged from the narratives. The overarching theme, A Different Life, was revealed in the mothers' stories of their unexpected roles as the parent of a child with severe disabilities. The first essential theme, Managing an Unexpected Life, was uncovered in the experiential descriptions of a maternal caregiver role that included elements that differed from mothers of typically developing children. The second essential theme, Finding My Own Way, was associated with mothers seeking and finding their own approaches to balancing the demands of caregiving and family life. The third essential theme, Serving as My Child's Voice, was revealed in the advocacy activities on behalf of their child and other community members with disabilities; and the fourth essential theme, Facing an Uncertain Future, was uncovered in experiential data suggesting uncertainty associated with their child's age-triggered transitions in the health care and educational settings, and with the prospect of maternal caregiving in the future. Future research is needed to gain a better understanding of the support needs of mothers caring for adolescents and young adults with severe physical disabilities. This study suggests the need for improvements in the delivery of family-centered health care services for adolescents and young adults with severe CP and their families, and the development of interventions to support and sustain family caregivers over the prolonged course of maternal caregiving.
Author: Agnes M. Burkhard
Publisher:
ISBN:
Category : Cerebral palsied
Languages : en
Pages : 246
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Book Description
Cerebral palsy is one of the most common causes of childhood disability, and a major cause of severe disability in children. Mothers of adolescents and young adults with severe CP often assume a role exceeding the usual normative activities of parenting in relation to the intensity, complexity, and temporal nature of the family caregiving experience. The aim of this phenomenologic inquiry was to explore the lived experience of maternal caregiving as experienced by mothers caring for adolescents and young adults with severe CP. Furthermore, the study sought to examine the essential aspects of this human experience using the phenomenological contextual processing and analysis method proposed by van Manen (1990). Eleven mothers were interviewed using a semi-structured interview format. One overarching theme, A Different Life, and four inter-related essential themes emerged from the narratives. The overarching theme, A Different Life, was revealed in the mothers' stories of their unexpected roles as the parent of a child with severe disabilities. The first essential theme, Managing an Unexpected Life, was uncovered in the experiential descriptions of a maternal caregiver role that included elements that differed from mothers of typically developing children. The second essential theme, Finding My Own Way, was associated with mothers seeking and finding their own approaches to balancing the demands of caregiving and family life. The third essential theme, Serving as My Child's Voice, was revealed in the advocacy activities on behalf of their child and other community members with disabilities; and the fourth essential theme, Facing an Uncertain Future, was uncovered in experiential data suggesting uncertainty associated with their child's age-triggered transitions in the health care and educational settings, and with the prospect of maternal caregiving in the future. Future research is needed to gain a better understanding of the support needs of mothers caring for adolescents and young adults with severe physical disabilities. This study suggests the need for improvements in the delivery of family-centered health care services for adolescents and young adults with severe CP and their families, and the development of interventions to support and sustain family caregivers over the prolonged course of maternal caregiving.
Author:
Publisher:
ISBN:
Category :
Languages : en
Pages :
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Book Description
This qualitative study describes the lived experience of five mothers who care for their child with severe cerebral palsy. The phenomenon was elicited utilizing Roy (Roy & Andrews, 1999) adaptation model of nursing as the theoretical framework and phenomenology implementing Colaizzi's (1978) method of data analysis. The themes identified capture the collective experiences of these women. The study examines an altered mothering role that begins with the diagnosis of the child with severe cerebral palsy and the adaptation necessary to care for the child. It describes how the mothers bonded and communicated with their child. Mothers also described how they dealt with multiple burdens, adapted with and without support and the altered family relationships that resulted. There is a description of the intense emotional responses of these mothers to the experience, and the positive aspects of this parenting experience.
Author: Betty J. Ackley
Publisher: Elsevier Health Sciences
ISBN: 0323089224
Category : Medical
Languages : en
Pages : 963
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Book Description
The 10th edition of the Nursing Diagnosis Handbook makes formulating nursing diagnoses and creating individualized care plans a breeze. Updated with the most recent NANDA-I approved nursing diagnoses, this convenient reference shows you how to build customized care plans in three easy steps: assess, diagnose, plan. Authors Elizabeth Ackley and Gail Ladwig use Nursing Outcomes Classification (NOC) and Nursing Interventions Classification (NIC) to guide you in creating care plans that include desired outcomes, interventions, patient teaching, and evidence-based rationales. Unique! Care Plan Constructor on the companion Evolve website offers hands-on practice creating customized plans of care. Alphabetical thumb tabs allow quick access to specific symptoms and nursing diagnoses. Suggested NIC interventions and NOC outcomes in each care plan. Recent and classic research examples promote evidence-based interventions and rationales. NEW! 4 Color text NEW! Includes updated 2012-2014 NANDA-I approved nursing diagnoses NEW! Provides the latest NIC/NOC, interventions, and rationales for every care plan. NEW! QSEN Safety interventions and rationales NEW! 100 NCLEX exam-style review questions are available on the companion Evolve website. NEW! Root Causing Thinking and Motivational Interviewing appendixes on the companion Evolve website.
Author: Betty J. Ackley, MSN, EdS, RN
Publisher: Elsevier Health Sciences
ISBN: 0323085490
Category : Medical
Languages : en
Pages : 963
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Book Description
The 10th edition of the Nursing Diagnosis Handbook makes formulating nursing diagnoses and creating individualized care plans a breeze. Updated with the most recent NANDA-I approved nursing diagnoses, this convenient reference shows you how to build customized care plans in three easy steps: assess, diagnose, plan. Authors Elizabeth Ackley and Gail Ladwig use Nursing Outcomes Classification (NOC) and Nursing Interventions Classification (NIC) to guide you in creating care plans that include desired outcomes, interventions, patient teaching, and evidence-based rationales. Unique! Care Plan Constructor on the companion Evolve website offers hands-on practice creating customized plans of care. Alphabetical thumb tabs allow quick access to specific symptoms and nursing diagnoses. Suggested NIC interventions and NOC outcomes in each care plan. Recent and classic research examples promote evidence-based interventions and rationales. NEW! 4 Color text NEW! Includes updated 2012-2014 NANDA-I approved nursing diagnoses NEW! Provides the latest NIC/NOC, interventions, and rationales for every care plan. NEW! QSEN Safety interventions and rationales NEW! 100 NCLEX exam-style review questions are available on the companion Evolve website. NEW! Root Causing Thinking and Motivational Interviewing appendixes on the companion Evolve website.
Author: Matthew Schmitz
Publisher: Elsevier Health Sciences
ISBN: 0323874037
Category : Medical
Languages : en
Pages : 435
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Book Description
The difference between an average surgeon and a master surgeon is often an ability to navigate and resolve surgical complications. Complications in Orthopaedics: Pediatrics provides expert guidance and offers real solutions to improve patient outcomes, both for the trainee and for the experienced surgeon. This brand new volume in the new Complications in Orthopaedics series from Dr. Stephen R. Thompson, co-editor of Miller's Orthopaedics and DeLee & Drez's Orthopaedic Sports Medicine, and Dr. Matthew R. Schmitz, focuses on how to get out of the weeds, with practical, use-now advice on pediatric trauma, upper extremity, spine, lower extremity, and neuromuscular/congenital disorders. - Describes how to navigate the most common or most devastating errors and complications in pediatric orthopaedic surgery, combining the breadth of knowledge of academic surgeons with the "'in-the-trenches skills of community surgeons. - Follows a templated, reader-friendly format throughout. - Emphasizes how to recognize and avoid errors, with thorough coverage of preoperative errors, intraoperative issues, and postoperative complications. - Includes video clips, clinical images, and MRI and CT scans to enhance and reinforce the material.
Author: Freeman Miller
Publisher: JHU Press
ISBN: 0801883547
Category : Health & Fitness
Languages : en
Pages : 537
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Book Description
When a child has a health problem, parents want answers. But when a child has cerebral palsy, the answers don't come quickly. A diagnosis of this complex group of chronic conditions affecting movement and coordination is difficult to make and is typically delayed until the child is eighteen months old. Although the condition may be mild or severe, even general predictions about long-term prognosis seldom come before the child's second birthday. Written by a team of experts associated with the Cerebral Palsy Program at the Alfred I. duPont Hospital for Children, this authoritative resource provides parents and families with vital information that can help them cope with uncertainty. Thoroughly updated and revised to incorporate the latest medical advances, the second edition is a comprehensive guide to cerebral palsy. The book is organized into three parts. In the first, the authors describe specific patterns of involvement (hemiplegia, diplegia, quadriplegia), explain the medical and psychosocial implications of these conditions, and tell parents how to be effective advocates for their child. In the second part, the authors provide a wealth of practical advice about caregiving from nutrition to mobility. Part three features an extensive alphabetically arranged encyclopedia that defines and describes medical terms and diagnoses, medical and surgical procedures, and orthopedic and other assistive devices. Also included are lists of resources and recommended reading.
Author: Karen Pridham, PhD, RN, FAAN
Publisher: Springer Publishing Company
ISBN: 0826140440
Category : Medical
Languages : en
Pages : 463
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Book Description
The first book about Guided Participation written for nurses This authoritative publication delivers an in-depth examination of Guided Participation (GP), a dynamic process of teaching and learning that parents and guardians have used for generations to help their charges become self-reliant. GP is helping another person become competent by providing expertise working alongside the learner. For the nurse specifically, this means educating and working alongside parents and children within an environment that supports health. Consistent with client- and family-centered practice, this fresh approach to nurse/client teaching is drawn a broad span of disciplines, including education, social and cultural anthropology, relationship-based attachment-caregiving theory, and developmental science. Written for students and practitioners who wish to incorporate GP into their practice, and for managers, administrators, and policy makers who support its implementation, this resource demonstrates the value of GP as a new and emerging health care model that integrates care across health care settings. The text describes, step-by-step, how to practice GP discusses support systems to maintain GP past the initial treatment. With abundant case studies, examples and research findings, chapters analyze how GP can promote health, prevent acute and chronic illness, and adjust old patterns of living and behaviors. Key Features: Includes video clips that illustrate how guided participation is applied in a variety of clinical practice settings Provides access to self-directed online instruction Links to online journal, case studies, additional chapters, and references Features downloadable parent checklists and teaching guides Discusses effective application of Guided Participation to all aspects of pediatric nursing care in a variety of practice settings Includes numerous case studies and examples with specific components identified to help readers learn theory and related concepts Learn to apply guided participation by joining the case-based online course offered at University of Wisconsin-Madison!
Author: Freeman Miller
Publisher: JHU Press
ISBN: 1421422158
Category : Family & Relationships
Languages : en
Pages : 492
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Book Description
"When their child has cerebral palsy, parents need answers. They seek up-to-date advice they can count on to make sure their child has the best possible health and well-being ... [This] new edition is thoroughly revised to incorporate the latest medical thinking, including advances in diagnosis, treatment, and terminology. Every chapter includes new content on topics ranging from genetics to pain, temperature control, palliative care, why growth suppression is sometimes recommended, the Affordable Care Act, and how to make it easier for siblings to cope. Chapter 8 has been entirely rewritten to better help adolescents prepare for the transition to adulthood. New classification systems, such as the gross motor function classification system and the Functional Mobility System, are described and explained. And a number of emerging therapies -- including marijuana oil, cord blood transfusion, deep brain stimulation, epilepsy surgery, and growing spinal rods -- are explored. Intended for parents, grandparents, teachers, therapists, and others who care for and about people with cerebral palsy and cerebral palsy-like conditions, this is an essential and compassionate guide."--Amazon.com
Author: Gillian Bridge
Publisher: Routledge
ISBN: 0429813449
Category : Social Science
Languages : en
Pages : 474
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Book Description
First published in 1999, this volume examines the inclusion of disabled children as a category of children in need under the Children Act 1989 and as eligible for assessments of need under the NHS and Community Care Act 1990 has drawn renewed attention to the plight of these children and their families. This book presents the findings from a study of parents whose child has cerebral palsy. The research undertaken at the cost of social policy change focuses on the apparent gap between the well-argued proposals for community care and the experiences of carers. A bewildering picture emerges of inadequate services and treatments from the health, education and social services in the public, voluntary and private sectors. Parents experience isolation and stress as they explore ways to improve the quality of their children’s lives by experimenting with unregulated and under-researched treatments for an incurable physical condition. The conclusion that there has been deterioration in provision for these families is a serious indictment on current social policy direction.
Author: Paul Boyle
Publisher:
ISBN:
Category :
Languages : en
Pages :
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Book Description
