Infant end-of-life care: the parents' perspective.

OBJECTIVE: The purpose of this study was to identify factors important to parents in their infant's end-of-life care. STUDY DESIGN: Participants were parents (n=19 families) whose infant (less than 1 year old) had died. Parents completed the Revised Grief Experience Inventory (RGEI) and a semi-structured interview regarding their infant's end-of-life care. Interviews were rated using the Post-Death Adaptation Scale (PDAS). RESULTS: Parents scored significantly lower than the normative sample on the RGEI, and PDAS scores suggested that these parents were adapting positively. Parent interviews identified the aspects of care that were important to parents: honesty, empowered decision-making, parental care, environment, faith/trust in nursing care, physicians bearing witness and support from other hospital care providers. CONCLUSIONS: Results of this study suggest that parents can effectively cope following the death of an infant and the medical staff can do much to improve the end-of-life care for infants and their families.

Cognitive and psychosocial functioning of pediatric hematopoietic stem cell transplant patients: a prospective longitudinal study.

A prospective longitudinal study of cognitive and psychosocial functioning in pediatric hematopoietic stem cell transplant (HSCT) patients was conducted on three occasions: pre-HSCT, 1 year post-HSCT, and 2 years post-HSCT. In contrast to the previous hypothesis that cognitive declines would occur as a result of HSCT treatment, it was hypothesized that (1) global cognitive functioning (IQ scores), as well as specific areas would remain stable over time; (2) pre-transplant functioning would be predictive of later functioning; and (3) age would be negatively related to cognitive functioning. Based on previous research it was further hypothesized: that (4) while declines in psychosocial functioning might be seen at 1 year, functioning would improve by 2 years. 153 children and adolescents were evaluated pre-HSCT and at 1 year, with 2 year data available for 74 children. Longitudinal analyses of Wechsler IQ data were completed on 100 children (longitudinal exact test) and 52 children (repeated measures analysis of variance. Results of cognitive assessment indicated (1) stability of IQ scores over time; and (2) that the strongest predictor was pre-HSCT cognitive functioning. Psychosocial assessment results indicated: (1) a low prevalence of behavioral and social problems; (2) stability in functioning over time; (3) pre-HSCT functioning strongly predictive of later functioning.

Unrelated donor bone marrow transplantation to treat severe aplastic anaemia in children and young adults.

Alternative donor bone marrow transplantation (BMT) to treat severe aplastic anaemia (SAA) in children and young adults has been complicated by high rates of graft rejection and severe graft-versus-host disease (GVHD). We hypothesized that increased immunosuppression combined with T-cell depletion of the marrow graft would enable successful use of unrelated donor BMT in this disease. Preconditioning consisted of cytosine arabinoside, cyclophosphamide, and total body irradiation (TBI). T-cell depletion was with the anti-CD3 antibody T10B9. GVHD prophylaxis consisted of cyclosporine A. 28 previously transfused patients were transplanted. Nine donor/recipient pairs were HLA matched. As of 1 January 1996, 15/28 (54%) patients are alive, transfusion independent and well with a range of follow-up of 13 months to 8 years (median 2.75 years). Fatalities include all three patients with nonengraftment and all three patients with grade III/IV GVHD. Other fatalities were due to infections or therapy-related toxicity. The incidence >or= grade II acute GVHD was 28%. These data show that in children with SAA who have failed immunosuppression, unrelated donor BMT offers a reasonable hope of long-term survival.

Family coping with pediatric leukemia: ten years after treatment.

As part of a longitudinal study of family coping with pediatric leukemia, 28 former patients (16 male; 12 female; M age = 19.1 years) and their parents (23 mothers; 12 fathers) participated in a follow-up study at 10 years posttreatment. Measures included the Current Adjustment Rating Scale, the Brief Symptom Inventory, the Ways of Coping Scale, the Family Coping Scale, and a semistructured interview. Long-term survivors and their parents continued to be well-adjusted to life posttreatment. Coping and perceived adjustment in long-term survivors were positively related to socioeconomic status and mother's coping and negatively related to academic problems. A strong bidirectional relationship was found between survivors' and mother's adjustment. Coping strategies were variable and not significantly correlated with coping adequacy or adjustment.

Family coping. Supportive and obstructive factors.

Successful coping with pediatric cancer enables the family to participate in the effective care of the child. This article focuses on those family variables associated with coping and adjustment to pediatric cancer. Among the variables most commonly noted as risk factors are the following: low socioeconomic status, concurrent stresses, low level of support, pre-existing serious psychologic problems in a family member, and inadequate coping resources. Implications of these risk factors for poor coping are discussed as well as recommendations for further investigation.

Sequences of staff-child interactions on a psychiatric inpatient unit.

Six psychiatry inpatients were observed during mealtimes to determine and evaluate staff intervention techniques. To extend and further elaborate the findings of a previous work (Pines, Kupst, Natta, & Schulman, 1985), staff behaviors (positive, punitive, isolating, and neutral) were investigated for their potential relationship to subsequent child behaviors (positive, negative, and inactive) via a lag sequential analytic approach. Staff punitive and isolating behaviors tended to be associated with significant increases in the likelihood of subsequent child negative behaviors and with significant decreases in child positive behaviors. Staff positive behaviors tended not to be related to a subsequent increase or decrease in any of the coded child behaviors. Findings demonstrate the utility of assessing conditional probabilities of sequences of staff-child behaviors in psychiatric inpatients.

Use of the timeout procedure in a child psychiatry inpatient milieu: combining dynamic and behavioral approaches.

An observational study of naturally-occurring timeouts was conducted in a child psychiatry inpatient milieu over a three-month period. Data from nine children were assessed. Child negative behavior was generally low in the timeout, processing, and return to activity phases. Results from individuals were discussed in terms of their diagnosis and events taking place on the unit. Staff behavior during timeouts were also described. The crucial role of processing after the timeout was discussed.

Psychosocial aspects of pediatric leukemia: from diagnosis through the first six months of treatment.

Newly diagnosed children with leukemia and their families were subjects of a longitudinal study to describe coping behaviors, to determine adequacy of coping, and to discover predictors of healthy coping with leukemia. Families were followed for six months during which time they were interviewed, completed tests and scales, and were rated by physicians, nurses, and psychosocial staff. Families showed a wide variety of reactions and coping behaviors. The data supported the hypothesis that most families cope well despite the stresses of the first six months post-diagnosis. Based on physicians' ratings, psychosocial intervention appeared to be effective for mothers during the early outpatient phase of treatment. Age of child, previous coping, coping of other family members, a good support system, and lack of additional stresses were significantly correlated with healthy coping. The need for longitudinal assessment of coping was stressed.

The psychological impact of pediatric bacterial meningitis on the family.

Twenty-eight families participated in a prospective study of family coping with childhood bacterial meningitis. Most of the parents were seen by physicians and nursing staff as exhibiting anxiety during the first week of treatment, and many mothers later reported their fear for the child's life. Depressive behavior was also commonly noted in mothers by physicians; however, both mothers and fathers were generally seen as cooperating with staff and communicating well with them. Most of the families were rated as coping well with the diagnosis and treatment by physicians, nurses and psychosocial staff. Nineteen families participated in a follow-up assessment 1 to 2 years after diagnosis. Coping was found to be relatively stable over time, and mothers' coping at the follow-up interview was significantly correlated with their coping at diagnosis. Most of them raised concerns about residual damage and fear of life-threatening illness. There were no significant differences between families who had received a psychological intervention and those who had not. Careful monitoring of parental knowledge and perceptions was recommended to prevent later problems.

Strategies of intervention with families of pediatric leukemia patients: a longitudinal perspective.

As part of a longitudinal research study, families of children with leukemia were provided with a psychosocial intervention program over a two-year period. This paper describes the approaches used at specific times during the illness: diagnosis and initial treatment, early outpatient treatment, later outpatient treatment, remission, relapse, and death. The goals of the intervention strategies were to facilitate: an understanding of the realities of the illness; management of emotional distress; and utilization of resources to care for the child, attend to other responsibilities, and support and communicate with one another.

The CPI subscales as predictors of parental coping with childhood leukemia.

Determined the role of the standard CPI subscales, the Summed Coping Scale, and the current Adjustment Rating Scale in prediction of parental coping with leukemia, with 30 mothers and 25 fathers of children with Leukemia. None of the standard CPI subscales was found to be a significant predictor of coping, as measured by a situation-specific instrument, the Family Coping Scale. The Summed Coping Scale and the CARS were significant as predictors for fathers, but not for mothers. It is suggested that coping with the specific situation may be a better predictor of later coping in a similar situation than more global assessments.

Instructions, feedback, and reinforcement in reducing activity levels in the classroom.

The biomotometer, an electronic device which simultaneously measures motor activity and provides auditory feedback, was used in combination with material reinforcers in an experiment to reduce children's activity level in a classroom setting. Subjects were nine boys and two girls, aged 9--13, from a day hospital program for emotionally disturbed children. After five baseline trials, each child had five contingent reinforcement trials in which he/she received feedback "beeps" from the biomotometer and was given toy or candy rewards after each trial in which activity fell at least 20% below mean baseline level. Then five noncontingent reinforcement trials were run in which children received rewards for wearing the apparatus without the feedback attachment. Results indicated that the intervention "package," including instructions, feedback, and contingent reinforcement, was successful in all five trials for 8 of 11 children. Activity levels increased during the final noncontingent phase.