Related Experiment Video

Updated: May 14, 2026

Enhancing the Development and Growth of Infant Cerebral Palsy Rats Using Selective Spinal Manipulations
05:04

Enhancing the Development and Growth of Infant Cerebral Palsy Rats Using Selective Spinal Manipulations

Published on: February 2, 2024

A different life: caring for an adolescent or young adult with severe cerebral palsy

Agnes Burkhard1

  • 1Marymount University, Malek School of Health Professions, Arlington, VA, USA. agnes.burkhard@marymount.edu

Journal of Pediatric Nursing
|February 13, 2013
PubMed

Mothers of children with severe functional disabilities often assume roles that exceed the normative activities of parenting in relation to the intensity, complexity, and temporal nature of the family caregiver experience. This phenomenologic inquiry explored the lived experience of caregiving among mothers caring for an adolescent or young adult with severe cerebral palsy. Data were collected through semi-structured interviews with 11 mothers and analyzed using van Manen's approach. Analyses revealed four interrelated essential themes related to managing an unexpected life, balancing caregiver demands, assuming advocacy roles, and facing an uncertain future. Findings suggest the need for improved supports and services to optimize family caregiving during this transitional period of family life.

More Related Videos

Event-related Potentials During Target-response Tasks to Study Cognitive Processes of Upper Limb Use in Children with Unilateral Cerebral Palsy08:26

Event-related Potentials During Target-response Tasks to Study Cognitive Processes of Upper Limb Use in Children with Unilateral Cerebral Palsy

Published on: January 11, 2016

A Battery of Motor Tests in a Neonatal Mouse Model of Cerebral Palsy10:02

A Battery of Motor Tests in a Neonatal Mouse Model of Cerebral Palsy

Published on: November 3, 2016

Related Concept Videos

Continuing Care01:25

Continuing Care

Continuing care describes the variety of health, personal, and social services provided over a prolonged period. The need for continuing care is increasing because people are living longer. Many people do not have families or others to care for them. Continuing care is mainly for patients who are disabled, functionally dependent, or suffering from a terminal disease. It is available within institutional settings or in homes. Examples include nursing centers or facilities, assisted living,...
Restorative Care01:19

Restorative Care

Restorative care is provided once a patient has been discharged from a healthcare facility and requires additional services. The additional services include home care, rehabilitation programs, and extended care. Restorative care centers help the patient regain their previous level of functioning or acquire a new level of functioning due to the incapacitating effects of a disease or a disability. It aims to assist patients in enhancing their quality of life by encouraging independence,...
Specialized Care Centers and Settings-II01:30

Specialized Care Centers and Settings-II

Rural Health Centers
Rural health centers are specialized care facilities in remote locations with very few medical personnel. The primary care providers who run the centers are mostly Registered Nurse Practitioners. Here, emergency treatment is provided to critically ill or injured patients before they are transferred to the closest hospital. Fortunately, due to advancement in technology, many rural healthcare facilities and professionals have easy access to diagnostic and treatment...
Specialized Care Centers and Settings-I01:30

Specialized Care Centers and Settings-I

Specialized care settings or centers are situated in convenient locations within the community and offer care to a specific group or population. They consist of daycare facilities, mental health facilities, rural health facilities, educational institutions, industries, shelters for the homeless, and rehabilitation facilities.
Daycare centers
They provide several functions. Some facilities care for healthy newborns and children whose parents work, while others are medically focused and care for...
Peripheral Artery Disease III: Interprofessional Care01:27

Peripheral Artery Disease III: Interprofessional Care

Peripheral Artery Disease (PAD) is characterized by narrowed arteries that diminish blood flow to the extremities. Effective management of PAD requires an interprofessional approach involving various healthcare professionals. The critical aspects of interprofessional care for PAD patients focus on risk factor modification, drug therapy, exercise therapy, nutrition therapy, critical limb ischemia care, and interventional radiology and surgical procedures.The primary treatment goal for PAD...
Traumatic Brain Injury l: Introduction01:28

Traumatic Brain Injury l: Introduction

DefinitionTraumatic brain injury, or TBI, is a disturbance of normal brain function induced by an external mechanical force, such as a direct blow to the head or a penetrating injury. It can affect both brain structure and function, producing a wide range of clinical outcomes. TBI is a heterogeneous condition, meaning its effects may differ based on the type, location, and severity of the injury.Basis of ClassificationTBI is classified based on severity, injury mechanism, or pathophysiology. In...