Psychologic adjustment of the family with a member who has cystic fibrosis. 1986

L Cowen, and J Mok, and M Corey, and H MacMillan, and R Simmons, and H Levison

Seventy-eight percent of the 384 patients 2 years of age and older who were enrolled in the Cystic Fibrosis Clinic at the Hospital for Sick Children participated in this study of family adjustment to cystic fibrosis. Residence with at least one parent at the time of the survey was a condition for inclusion in the study. The effect of the disease on the family was assessed using three questionnaires: an inventory of family problems as perceived by the parents and two standardized measures of family interaction. Measures of behavior and self-concept in each patient and sibling, physical disease parameters for each patient, and demographic characteristics of the families were examined and analyzed in relation to the responses to the questionnaires on family interaction. Families of patients with cystic fibrosis were found to function very well, with normal mean scores on both standardized profiles. Children with cystic fibrosis showed more behavior problems than expected from the test norms, and healthy siblings of children with cystic fibrosis had behavior problem scores midway between those with the disease and norm scores. Measures of self-concept were remarkably similar for patients and siblings and showed levels at or above those for children and young adults in the general population. Parents psychosocial scores were influenced by the patients' physical parameters, but the severity of the disease generally was unrelated to psychosocial scores of patients and siblings. A notable exception was the correlation of emotional disturbance with amount of hospitalization in patients older than 12 years of age.

UI MeSH Term Description Entries
D008297 Male Males
D008875 Middle Aged An adult aged 45 - 64 years. Middle Age
D009035 Mothers Female parents, human or animal. Mothers' Clubs,Club, Mothers',Clubs, Mothers',Mother,Mother Clubs,Mother's Clubs,Mothers Clubs,Mothers' Club
D011581 Psychological Tests Standardized tests designed to measure abilities (as in intelligence, aptitude, and achievement tests) or to evaluate personality traits. Parenting Stress Index,Trier Social Stress Test,Trier Stress Test,Psychologic Tests,Psychological Test,Test, Psychological,Tests, Psychological,Index, Parenting Stress,Psychologic Test,Stress Index, Parenting,Stress Test, Trier,Test, Psychologic,Test, Trier Stress,Trier Stress Tests
D011795 Surveys and Questionnaires Collections of data obtained from voluntary subjects. The information usually takes the form of answers to questions, or suggestions. Community Survey,Nonrespondent,Questionnaire,Questionnaires,Respondent,Survey,Survey Method,Survey Methods,Surveys,Baseline Survey,Community Surveys,Methodology, Survey,Nonrespondents,Questionnaire Design,Randomized Response Technique,Repeated Rounds of Survey,Respondents,Survey Methodology,Baseline Surveys,Design, Questionnaire,Designs, Questionnaire,Methods, Survey,Questionnaire Designs,Questionnaires and Surveys,Randomized Response Techniques,Response Technique, Randomized,Response Techniques, Randomized,Survey, Baseline,Survey, Community,Surveys, Baseline,Surveys, Community,Techniques, Randomized Response
D002648 Child A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL. Children
D002653 Child Behavior Disorders Disturbances considered to be pathological based on age and stage appropriateness, e.g., conduct disturbances and anaclitic depression. This concept does not include psychoneuroses, psychoses, or personality disorders with fixed patterns. Childhood Behavior Disorders,Behavior Disorder, Child,Behavior Disorder, Childhood,Child Behavior Disorder,Childhood Behavior Disorder,Disorder, Childhood Behavior
D002675 Child, Preschool A child between the ages of 2 and 5. Children, Preschool,Preschool Child,Preschool Children
D003550 Cystic Fibrosis An autosomal recessive genetic disease of the EXOCRINE GLANDS. It is caused by mutations in the gene encoding the CYSTIC FIBROSIS TRANSMEMBRANE CONDUCTANCE REGULATOR expressed in several organs including the LUNG, the PANCREAS, the BILIARY SYSTEM, and the SWEAT GLANDS. Cystic fibrosis is characterized by epithelial secretory dysfunction associated with ductal obstruction resulting in AIRWAY OBSTRUCTION; chronic RESPIRATORY INFECTIONS; PANCREATIC INSUFFICIENCY; maldigestion; salt depletion; and HEAT PROSTRATION. Mucoviscidosis,Cystic Fibrosis of Pancreas,Fibrocystic Disease of Pancreas,Pancreatic Cystic Fibrosis,Pulmonary Cystic Fibrosis,Cystic Fibrosis, Pancreatic,Cystic Fibrosis, Pulmonary,Fibrosis, Cystic,Pancreas Fibrocystic Disease,Pancreas Fibrocystic Diseases
D005190 Family A social group consisting of parents or parent substitutes and children. Family Life Cycles,Family Members,Family Life Cycle,Family Research,Filiation,Kinship Networks,Relatives,Families,Family Member,Kinship Network,Life Cycle, Family,Life Cycles, Family,Network, Kinship,Networks, Kinship,Research, Family

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