Developmental and degenerative patterns associated with cognitive, behavioural and motor difficulties in the Sanfilippo syndrome: an epidemiological study
Parents; Family; Male; Child; Humans; Adult; Adolescent; Child Development; Stress Psychological; Female; Child Preschool; Motor Skills; Infant; Child Behavior Disorders; Cognition; Mucopolysaccharidoses; Mucopolysaccharidosis III; behavioral problems; feeding difficulties; urinary incontinence; MPSII; MPSIII; trajectory; characteristics; hyperactivity; sleep disturbance; sleep problems; physical aggression; aggression
The results of a survey given to parents with Sanfilippo syndrome (MPS III) children (n = 30) are described with an emphasis in several areas. Developmental and degenerative patterns are outlined in detail and contrasted with developmental milestones of normal children. An essentially uniform pattern of behaviour problems was discovered and is discussed along with the efficacy of pharmacological and non-pharmacological approach to remediation. Finally, practical suggestions are offered for physicians and parents which are encountered by the daily management problems of children with this disorder.
Nidiffer F D; Kelly T E
Journal of Mental Deficiency Research
1983
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/j.1365-2788.1983.tb00291.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2788.1983.tb00291.x</a>
Spiritual suport in life threatening illness
Parent caregivers
This work evaluated the experiences of 45 parents of children with cancer and 101 cancer patients with their home pastors and hospital chaplains. The satisfactions and difficulties encountered in these interactions are detailed, and recommendations are offered to aid persons in acute distress. Individuals in these circumstances appear to desire spiritual support more than evident psychological aid, though the skillful use of the latter to understand the religious desires of the patients and parents is appreciated. It is also evident that pastors dealing with problems related to potential terminality are themselves under considerable stress.
1983
Spilka B; Spangler JD; Nelson CB
Journal Of Religion And Health
1983
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Journal Article
<a href="http://doi.org/10.1007/bf02296390" target="_blank" rel="noreferrer">10.1007/bf02296390</a>
Death of a child at home or in the hospital: subsequent psychological adjustment of the family
Child; Female; Hospitalization; Humans; Male; Grief; Family; Adult; Middle Aged; Death; Personality Inventory; Non-U.S. Gov't; P.H.S.; Research Support; U.S. Gov't; Adaptation; Psychological; Comparative Study; Neoplasms/therapy; location of death; Interview; home care services; MMPI; Terminal Care/methods
Twenty-four families who had participated in a Home Care Program for children terminally ill with cancer and 13 families of similar children who had died in the hospital completed inventories on parent and sibling personality as well as family functioning three to 29 months after the child's death. Parents of patients who received terminal care in the hospital were more anxious, depressed, and defensive and had greater tendencies toward somatic and interpersonal problems than parents of patients in the Home Care Program. Siblings of patients who received terminal care in the hospital were more emotionally inhibited, withdrawn, and fearful than their counterparts in the Home Care Program. Although some group differences in parental personality may have antedated terminal care, these results confirm parental reports of more adequate family adjustment following participation in a structured Home Care Program.
Mulhern RK; Lauer ME; Hoffmann RG
Pediatrics
1983
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0002-7138(09)61529-6" target="_blank" rel="noreferrer">10.1016/s0002-7138(09)61529-6</a>
Measuring individual differences in empathy: Evidence for a multidimensional approach
1983
Davis Mark H
Journal Of Personality And Social Psychology
1983
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1037//0022-3514.44.1.113" target="_blank" rel="noreferrer">10.1037//0022-3514.44.1.113</a>
Patient satisfaction and change in medical care provider: a longitudinal study
Longitudinal Studies; Probability; Ohio; Consumer Satisfaction; Continuity of Patient Care; Personal Health Services; Primary Health Care
Longitudinal data from The Rand Corporation's Health Insurance Experiment were used to test the hypothesis that provider continuity can be modeled as one behavioral consequence of patient satisfaction. Bivariate and multivariate analyses (controlling for sociodemographic characteristics, prior use of services, health status, and health insurance plan) supported our hypotheses. A multivariate linear probability function indicated that a 1-point decrease on a general satisfaction scale was associated with a 3.4 percentage-point increase in the probability of provider change. The relationship between satisfaction scores and continuity during the following year appears to be roughly linear; we observed no "threshold" satisfaction level at which the probability of provider change increased markedly. We discuss needed improvements in the measurement of provider continuity and the need for further study of other behavioral consequences of patient satisfaction.
1983
Marquis MS; Davies AR; Ware JE
Medical Care
1983
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Journal Article
<a href="http://doi.org/10.1097/00005650-198308000-00006" target="_blank" rel="noreferrer">10.1097/00005650-198308000-00006</a>
Effects of sibling death on teenagers
adolescent; Female; Humans; Male; Death; Adolescent Psychology; Family; Adult; Interpersonal Relations; Self Concept; Attitude to Death; Peer Group; Sibling Relations; Grief; sibling bereavement
This study reports the effects of sibling death on 33 adolescents from white, middle- to upper-middle income families. Contact was made through mutual support groups for bereaved parents. A focused interview was used to gather data on bereavement reactions and on self-concept. Bereavement reactions investigated included kinds of emotional responses, effects on sleeping and eating, frequency of thoughts about the deceased sibling, effects on school work, means of dealing with the death and interpersonal relationships. Self-concept perception investigated were perceptions of personal maturity, lessons learned from the death and the importance of religious beliefs. Eleven further measures of self-concept were obtained by means of the "Offer Self-Image Questionnaire for Adolescents." By grouping responses into two time frames (before or a few weeks after the death and at the time of the interview), significant differences in reactions and perceptions were found among the participants.
1983-01
Balk D
The Journal Of School Health
1983
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Journal Article
<a href="http://doi.org/10.1111/j.1746-1561.1983.tb04046.x" target="_blank" rel="noreferrer">10.1111/j.1746-1561.1983.tb04046.x</a>
Cross-Illness Comparison of Separation and Divorce among Parents Having a Child with a Life-Threatening Illness
Parent caregivers; Child Illness; Divorce; Separation
Methodological problems make it difficult to determine whether or not the rate of separation or divorce among families caring for a child with a chronic life-threatening illness such as leukemia, spina bifida, or cystic fibrosis is higher than expected The best studies indicate that the probabilty of divorce is not higher, but some contradictory evidence suggests the need for further investigation Parents who divorce rarely attribute their separation to the child s illness Since 20% to 50% of parents report a strengthening of their marriage, research on effective family coping should receive high priority.
1983
Kalnms IV
Children's Health Care
1983
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1207/s15326888chc1202_4" target="_blank" rel="noreferrer">10.1207/s15326888chc1202_4</a>
A global measure of perceived stress.
Female; Humans; Male; Adult; Longitudinal Studies; Life Change Events; Psychometrics; Stress; Psychological; Students; Students/psychology; Tobacco Use Disorder/psychology; Affective Symptoms; Affective Symptoms/psychology; Psychological/diagnosis; Tobacco Use Disorder
1983
Cohen S; Kamarck T; Mermelstein R
Journal Of Health And Social Behavior
1983
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Journal Article
<a href="http://doi.org/10.2307/2136404" target="_blank" rel="noreferrer">10.2307/2136404</a>
Measuring marital quality: A critical look at the dependent variable.
Longitudinal Studies
1983
Norton R
Journal Of Marriage And The Family
1983
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Journal Article
<a href="http://doi.org/10.2307/351302" target="_blank" rel="noreferrer">10.2307/351302</a>
Must patients always be given food and water?
Humans; United States; Withholding Treatment; Social Values; Euthanasia; Risk Assessment; Moral Obligations; Ethics; Parenteral Nutrition; Medical; Death and Euthanasia; Analytical Approach; RDF Project; Passive; Life Support Care/legislation & jurisprudence; Malpractice/legislation & jurisprudence; Philosophical Approach
KIE: The widespread consensus that withholding certain life-sustaining treatments, especially those entailing substantial suffering, is sometimes in a patient's best interest conflicts with our basic instincts when the treatments are food and water. Lynn and Childress examine the medical aspects of various nutritional options and the moral obligations pertinent to decision making. They conclude that, in certain limited cases, malnutrition and dehydration need not be corrected and that nutrition and hydration are not distinguishable morally from other life-sustaining treatments that may on occasion be withheld or withdrawn.
1983
Lynn J; Childress JF
The Hastings Center Report
1983
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Journal Article
<a href="http://doi.org/10.2307/3560572" target="_blank" rel="noreferrer">10.2307/3560572</a>
Adolescents with chronic disease: Are they receiving comprehensive health care?
Adolescent Transitions
1983
Carroll G; Massarelli E; Opzoomer A; Pekeles G; Pedneault M; Frappier J; Onetto N
Journal Of Adolescent Health Care
1983
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Journal Article
<a href="http://doi.org/10.1016/S0197-0070(83)80008-4" target="_blank" rel="noreferrer">10.1016/S0197-0070(83)80008-4</a>
National hospice study analysis plan
United States; Family; Research Design; Non-U.S. Gov't; P.H.S.; U.S. Gov't; Models; Costs and Cost Analysis; Human; Theoretical; Support; Hospices/economics; Evaluation Studies/methods; Health Services Research/methods
Since the founding of the first hospice in the United States in 1974, the number of health care organizations providing hospice services has grown rapidly. In 1978, the U.S. General Accounting Office identified 59 operational hospices [1]. A survey undertaken by the National Hospice Organization (NHO) in 1980 found 235 operational programs and many more actively planning to deliver services. By the summer of 1981, the Joint Commission on the Accreditation of Hospitals (JCAH), in studying the feasibility of a voluntary hospice accreditation program, had 650 responses to a national survey [2]. Finally, the 1981 NHO directory identifies 464 operational "provider programs" as well as 33 functioning state-level hospice organizations with an additional 353 programs in various stages of establishing hospice programs of care [3]. The growth of the movement and the public recognition it has received have catalyzed advocacy of Federal support for hospice services. In 1979, the Congress responded by mandating a study to delineate the implications of inclusion of hospice services in the Medicare program. The Health Care Financing Administration (HCFA) then selected 26 hospices (from an applicant pool of 233) to participate in a two-year experimental program. These demonstration sites receive reimbursement for services provided Medicare beneficiaries not otherwise available under current regulations. The special reimbursement provisions went into effect on October 1, 1980. (See Appendix A: Description of the Hospice Reimbursement Program.) In the spring of 1980, the Robert Wood Johnson Foundation and the John A. Hartford Foundation joined with the Health Care Financing Administration (HCFA) to solicit proposals for a national evaluation of hospice care as a basis for future Federal fiscal policy and legislation. Brown University was selected as the evaluation center by competitive process and the grant was awarded on September 30, 1980. The evaluation employs a quasi-experimental design in which the impact of hospice care (with and without reimbursement) on quality of life and costs are compared to non-hospice (conventional) terminal care. Eight hundred patients and families in 24 comparison sites located in three regional areas (Southern New England, Northern Midwest and Southern California) are expected to participate. Primary data collection began on August 1, 1981. Analyses of differential outcome are performed using standard linear multiple regression and logistic multiple regression with separate models for each comparison group. Effects are tested by separately estimating the specific response variable for the prototype (average) hospice patient for each model.
1983
Greer DS; Mor V; Sherwood S; Morris JN; Birnbaum H
Journal Of Chronic Diseases
1983
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Journal Article
Continuous subcutaneous infusion of morphine in children with cancer
Child; Adult; Preschool; infant; Infusions; Human; Palliative Care; Parenteral; Adolescence; Morphine/administration & dosage/adverse effects; Neoplasms/drug therapy
Seventeen children with severe pain due to malignant neoplasm were successfully treated with a subcutaneous infusion of morphine sulfate using a syringe pump. Pain relief was adequate in every case without major side effects. The median dosage required was 0.06 mg/kg/hr (range, 0.025 to 1.79 mg/kg/hr). Three patients received the subcutaneous infusion at home. No patient required an intravenous line for pain control.
1983
Miser AW; Davis DM; Hughes CS; Mulne AF; Miser JS
American Journal Of Diseases Of Children
1983
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Journal Article
The use of coping strategies in chronic low back pain patients: Relationship to patient characteristics and current adjustment
Cognitive and behavioral pain coping strategies were assessed by means of questionnaire in a sample of 61 chronic low back pain patients. Data analysis indicated that the questionnaire was internally reliable. While patients reported using a variety of coping strategies, certain strategies were used frequently whereas others were rarely used. Three factors: (a) Cognitive Coping and Suppression, (b) Helplessness and (c) Diverting Attention or Praying, accounted for a large proportion of variance in questionnaire responses. These 3 factors were found to be predictive of measures of behavioral and emotional adjustment to chronic pain above and beyond what may be predicted on the basis of patient history variables (length of continuous pain, disability status and number of pain surgeries) and the tendency of patients to somaticize. Each of the 3 coping factors was related to specific measures of adjustment to chronic pain.
1983-09
Rosenstiel AK; Keefe FJ
Pain
1983
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Journal Article
<a href="http://doi.org/10.1016/0304-3959(83)90125-2" target="_blank" rel="noreferrer">10.1016/0304-3959(83)90125-2</a>
The anatomy of bereavement
bereavement
Raphael B
1983
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Book/Book Section
On the robustness of LISREL (maximum likelihood estimation) against small sample size and non-normality
Models; statistical
Boomsma A
1983
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Book/Book Section