Parents' experience of coming to know the care of a chronically ill child. 1994

M D Jerrett
Queen's University, School of Nursing, Kingston, Ontario, Canada.

The family is the primary source of care for a chronically ill child, and it is the parents who must manage the child's illness on a daily basis. This qualitative study was undertaken to investigate the ways in which 10 two-parent families of children with juvenile arthritis experience their child's illness. In this paper the theme of coming to terms with the management of the illness and what it entails for the parents is examined. The data provide evidence of how the parents learn, and their efforts and experience of learning to care for the child on a daily basis. This is a complex process and includes the different phases the parents experience as they move through the learning process. The findings suggest that the parents learn the child's care and make adjustments to the demands of managing the child's illness in a way that works best for them.

UI MeSH Term Description Entries
D007389 Internal-External Control Personality construct referring to an individual's perception of the locus of events as determined internally by his or her own behavior versus fate, luck, or external forces. (ERIC Thesaurus, 1996). Locus of Control,External-Internal Control,Sense of Control,Control Locus,Control, External-Internal,Controls, External-Internal,Controls, Internal-External,Internal-External Controls
D007858 Learning Relatively permanent change in behavior that is the result of past experience or practice. The concept includes the acquisition of knowledge. Phenomenography
D010290 Parents Persons functioning as natural, adoptive, or substitute parents. The heading includes the concept of parenthood as well as preparation for becoming a parent. Step-Parents,Parental Age,Parenthood Status,Stepparent,Age, Parental,Ages, Parental,Parent,Parental Ages,Status, Parenthood,Step Parents,Step-Parent,Stepparents
D010934 Planning Techniques Procedures, strategies, and theories of planning. Planning Theories,Methodology, Planning,Planning Methodology,Planning Technic,Planning Methodologies,Planning Technics,Planning Technique,Planning Theory,Technic, Planning,Technique, Planning,Theory, Planning
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D006701 Home Nursing Nursing care given to an individual in the home. The care may be provided by a family member or a friend. Home nursing as care by a non-professional is differentiated from HOME CARE SERVICES provided by professionals: visiting nurse, home health agencies, hospital, or other organized community group. Home Care, Non-Professional,Nursing, Home,Home Care, Nonprofessional,Care, Non-Professional Home,Care, Nonprofessional Home,Home Care, Non Professional,Non-Professional Home Care,Nonprofessional Home Care
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000223 Adaptation, Psychological A state of harmony between internal needs and external demands and the processes used in achieving this condition. (From APA Thesaurus of Psychological Index Terms, 8th ed). Behavior, Adaptive,Healthy Adaptation,Positive Adaptation,Psychological Recovery,Adaptation, Psychologic,Adjustment,Psychological Adaptation,Adaptation, Healthy,Adaptation, Positive,Adaptive Behavior,Adaptive Behaviors,Healthy Adaptations,Positive Adaptations,Psychologic Adaptation,Psychological Recoveries,Recovery, Psychological
D000328 Adult A person having attained full growth or maturity. Adults are of 19 through 44 years of age. For a person between 19 and 24 years of age, YOUNG ADULT is available. Adults
D001171 Arthritis, Juvenile Arthritis in children, with onset before 16 years of age. The terms juvenile rheumatoid arthritis (JRA) and juvenile idiopathic arthritis (JIA) refer to classification systems for chronic arthritis in children. Only one subtype of juvenile arthritis (polyarticular-onset, rheumatoid factor-positive) clinically resembles adult rheumatoid arthritis and is considered its childhood equivalent. Arthritis, Juvenile Chronic,Arthritis, Juvenile Idiopathic,Arthritis, Juvenile Rheumatoid,Childhood Arthritis,PCJIA,PJIA Polyarticular Juvenile Idiopathic Arthritis,Polyarticular Juvenile Idiopathic Arthritis,Polyarticular-Course Juvenile Idiopathic Arthritis,Still's Disease, Juvenile-Onset,Enthesitis-Related Arthritis, Juvenile,Juvenile Chronic Arthritis,Juvenile Idiopathic Arthritis,Juvenile Rheumatoid Arthritis,Juvenile-Onset Still Disease,Juvenile-Onset Stills Disease,Oligoarthritis, Juvenile,Polyarthritis, Juvenile, Rheumatoid Factor Negative,Polyarthritis, Juvenile, Rheumatoid Factor Positive,Psoriatic Arthritis, Juvenile,Still Disease, Juvenile-Onset,Systemic Arthritis, Juvenile,Arthritides, Childhood,Arthritis, Childhood,Arthritis, Juvenile Enthesitis-Related,Arthritis, Juvenile Psoriatic,Arthritis, Juvenile Systemic,Childhood Arthritides,Chronic Arthritis, Juvenile,Enthesitis Related Arthritis, Juvenile,Idiopathic Arthritis, Juvenile,Juvenile Arthritis,Juvenile Enthesitis-Related Arthritis,Juvenile Oligoarthritis,Juvenile Onset Still Disease,Juvenile Onset Stills Disease,Juvenile Psoriatic Arthritis,Juvenile Systemic Arthritis,Juvenile-Onset Still's Disease,Rheumatoid Arthritis, Juvenile,Still Disease, Juvenile Onset,Still's Disease, Juvenile Onset,Stills Disease, Juvenile-Onset

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