Impact On Family Scale Research Articles

Prospective evaluation of comorbidity and psychosocial need in children and adolescents with anorectal malformations. Part 2: Evaluation of psychosocial need

Only a few patients with anorectal malformations (ARM) have satisfactory bowel functions. Studies of ARM have reported psychosocial problems in up to 73% of patients. The aim of the current study was to document the psychosocial needs of patients with ARM. Between June 2004 and September 2005, 44 patients with ARM were treated; the sample included 30 patients (23 males and 7 females) aged 4-17. To focus on potential psychosocial strain, a comprehensive grading system with a sophisticated perspective of continence, associated malformations, number of surgical interventions and postoperative complications was introduced. For psychosocial screening, the following instruments were used: German "Basis-Dokumentation" (BADO), Impact on Family Scale (IFS), the Strengths and Difficulties Questionnaire (SDQ). All families assessed their own psychosocial needs. An extensive psychosocial programme was provided. Twenty-three patients were suffering severe burden according to the comprehensive grading system. Nearly half of the families reported increased financial stress, and one-third reported emotional or hyperactivity problems of the child. More than 70% confirmed psychosocial need. Paediatric surgeons should promote psychosocial support for all patients who suffer severe forms of ARM or its numerous associated malformations as well as for patients undergoing numerous surgical interventions or having many postoperative complications.

The Impact of Adaptive Seating Devices on the Lives of Young Children With Cerebral Palsy and Their Families

Ryan SE, Campbell KA, Rigby PJ, Fishbein-Germon B, Hubley D, Chan B. The impact of adaptive seating devices on the lives of young children with cerebral palsy and their families. Objective To determine the parent-perceived effect of adaptive seating devices on the lives of young children with cerebral palsy (CP) (aged 2–7y) and their families. Design Baseline-intervention-baseline study. Setting Homes of participating families. Participants Thirty parents and their children with Gross Motor Function Classification System level III or IV CP. Interventions Two special-purpose seating devices: 1 for sitting support on the floor or on a chair and the other for postural control on a toilet. Main Outcome Measures Family Impact of Assistive Technology Scale (FIATS) and Impact on Family Scale (IFS). Results Thirty parents (29 mothers, 1 father) and their children with CP participated. Repeated-measures analysis of variance detected significant mean differences among the FIATS scores (F 1.4,40.6=19.25, P<.001). Post hoc testing confirmed significant mean differences in overall FIATS scores between baseline and intervention and intervention and postintervention phases. The test of within-subject effects did not detect a significant change among IFS mean scores. Conclusions The introduction of adaptive seating devices for young children who need support to sit had a meaningful, positive impact on child and family life. Removal of the study devices showed a concomitant negative impact on key aspects of child and family life. Environmental resources, such as seating and other assistive technology devices, may have an important role to play in the lives of young children with physical disabilities and their families.

Impact on family of survivors of congenital diaphragmatic hernia repair: a pilot study

Background/Purpose We hypothesized that long-term impact on the family of survivors of congenital diaphragmatic hernia (CDH) would vary based on the child's current clinical problems and clinical severity, family income, insurance, and out-of-pocket expenses. Methods Parents of a retrospective cohort of 53 CDH survivors who underwent repair at Children's Hospital Boston in Massachusetts from 1991 through 1999 completed the Impact on Family Scale (IFS), the Child Health Ratings Inventories General Health Module Parent Report, a rating of their child's clinical severity, an inventory of current clinical problems, and family demographics. Statistical tests of the primary outcome, the IFS total score, were performed. Results Survivors of CDH had a median age of 8 years. Most families had private insurance (78%) and annual income levels higher than the federal poverty level (96%). The IFS total score was correlated with child's clinical severity ( r = 0.71, P < .001) and was worse among families of children with current clinical problems ( P = .01), families with public insurance ( P = .01), and those with out-of-pocket expenses of at least $500 ( P = .002). Regression analysis identified the independent effect of clinical severity on family impact ( P < .001). Conclusion Family impact is profound and long-standing at a median of 8 years after surgery for a subset of CDH survivors with more severe conditions and current clinical problems.

Brief Report: Psychosocial Functioning of Fathers as Primary Caregivers of Pediatric Oncology Patients

To evaluate the psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. Fathers who identified themselves as the primary medical caregivers were given a packet of questionnaires, including the Brief Symptom Inventory (BSI), the Impact of Event Scale (IES), the Impact on Family Scale (IFS), the Caregiver Strain Questionnaire (CGSQ), and the Parent Experience of Child Illness (PECI) scale, to complete and return by mail. The 23 fathers who returned the questionnaire packets were compared with 23 mothers who were matched on demographic variables. There were no differences between groups on self-report measures of distress or illness-related parenting stress. Descriptively, however, the majority of parents were above normative means on measures of psychological distress with a significantly greater proportion of fathers endorsing elevated levels of depression on the BSI. Including fathers in pediatric psychosocial research is important and represents a growing trend in psycho-oncology.

Validity of the revised Impact on Family (IOF) scale

To assess psychometric properties of the revised 15-item Impact on Family (IOF) Scale. A secondary analysis of items using data collected from 252 parents during an earlier randomized clinical trial. Exploratory factor analysis and confirmatory factor analysis identified a single factor with factor loadings similar to that of IOF developers. The one factor accounts for 45.7% of the sample variance. An Item Response Theory analysis found that 11 of the 15 items had alpha values greater than 1.00, with good to excellent item characteristic and item information curves. The test information and measurement error curves for the entire IOF were excellent. Construct validity of the IOF also was supported. Parent IOF scores correlated in the expected directions with maternal mood (r = -0.50), sibling behavior problems (r = -0.35), and severity of illness (r = 0.31) and were associated with family socioeconomic status (t = -4.5, all P < .001). This study provides independent support for validity and reliability of the revised IOF scale. This scale is a promising, easy-to-use instrument for the measurement of impact of illness and disability on families of children with chronic illness or disability.

PTSD and psychological distress in Icelandic parents of chronically ill children: Does social support have an effect on parental distress?

The purpose of the study was to investigate psychological distress and the prevalence of PTSD among Icelandic parents of chronically ill children, and the potential effects of social support on distress, at two points in time. The Impact on Family scale (IFS), the Trauma Symptom Checklist (TSC), the Harvard Trauma Questionnaire (HTQ) and the Crisis Support Scale (CSS) were completed by 105 parents of children with various diseases (69 mothers and 36 fathers). Despite the heterogeneity of the sample in terms of disease type, PTSD was present in 13.2% of the parents and an additional 28.6% had subclinical PTSD. Time since diagnosis, length of hospitalizations and disease-related daily care predicted 40% of the HTQ total score.

Risk and Resistance Factors for Psychological Distress in Icelandic Parents of Chronically Ill Children: An Application of Wallander and Varni’s Disability-Stress-Coping Model

The purpose of the study was to investigate Wallander and Varni’s (1998) disability-stress coping model in a sample of 105 Icelandic parents of chronically ill children. The Revised Adult Attachment Scale (RAAS), the Attributional Scale (AS), the Defence Style Questionnaire (DSQ), the Sense of Coherence Scale (SOC), the World Assumption scale (WAS), The Coping Style Questionnaire (CSQ), The Impact on Family scale (IFS), the Trauma Symptom Checklist (TSC), and the Harvard Trauma Questionnaire (HTQ), were completed by the parents of children with various diseases. Despite the heterogeneity of the sample in terms of disease type, PTSD was present in 13.2% of the parents and an additional 28.6% had subclinical PTSD. Emotional coping, extent of daily care, time since diagnosis, and changes in employment due to the disease explained 71% of the variance in HTQ total score.

Exploring the comparative responsiveness of a core set of outcome measures in a school‐based conductive education programme

Conductive education (CE) is a holistic educational system that uses an active cognitive approach to teach individuals with motor disorders to become more functional participants in daily activities. While CE's popularity continues to grow in North America and Europe, its effectiveness has not been established. The lack of definition of responsive outcome measures for evaluation of CE programmes has limited the interpretability of conclusions from earlier studies evaluating effectiveness. To determine which measures from a core set were most responsive to physical, functional and psychosocial changes associated with a school-based CE programme. This was a one-group before and after data collection design using an 8-month follow-up period. We enrolled a referral sample of nine children with cerebral palsy in Kindergarten or Grade 1 (Gross Motor Function Classification System levels 3, 4 or 5). The study took place within a school-based CE programme at a Canadian children's rehabilitation centre. Children participated in a CE full-day class for an entire school year. Physical, functional, psychosocial and participation measures included: Gross Motor Function Measure (GMFM), Quality of Upper Extremity Skills Test (QUEST), Peabody Developmental Motor Scales, Paediatric Evaluation of Disability Inventory (PEDI), Pictorial Scale of Perceived Competence and Social Acceptance for Young Children, Individualized Educational Plan, and Goal Attainment Scaling (GAS). Four children from the study's second year were also evaluated on the Impact on Family Scale (IFS), GAS and School Function Assessment. The Gross Motor Function Measure, QUEST, PEDI (Caregiver Assistance) and IFS were most responsive to change. GAS was useful in documenting and quantifying goals. Problems were encountered in evaluating self-esteem and school participation. Several strong measures of outcome were identified. Further work is needed to find valid and sensitive psychosocial and school participation measures for these young children.

Brief report: parental burden and grief one year after the birth of a child with a congenital anomaly

To assess parental burden and grief one year after having a child with a congenital anomaly. Twenty-five couples completed the Impact on Family Scale (IFS) and 22 couples answered the Perinatal Grief Scale (PGS). In addition, 27 mothers completed the Functional Health Status Scale (FSII-R). Mothers and fathers showed no significant differences in overall burden (IFS) and grief (PGS). Regarding the subscales, mothers reported significantly more personal strain. Foreknowledge from prenatal diagnosis about the anomaly, a low perceived functional health status of the child, and multiple congenital anomalies increased the burden and grief. A perinatal counseling team that provides clear and consistent information about the anomalies, the treatment, and the prognosis would help to reduce unnecessary stress and uncertainty, particularly for parents who received prenatal information and whose infant has multiple congenital anomalies.

The Impact of Children with HIV Infection on the Family System

The authors examined the effects of HIV infection on the family system as reported by 48 caregivers of HlV-exposed children. Respondents completed the Impact on Family Scale (IFS) as part of their participation in the study. Results showed that the psychological burden of the illness was significantly related to the child's HIV status; financial burden, social/familial Impact, and psychological burden of the Illness were significantly related to the caregiver's HIV status; psychological burden and social/familial impact differed as a function of the child's and caregiver's HIV status; and the Impact of HIV infection differed as a function of the caregiver relationship. Implications of the findings for service delivery are discussed.

The Impact on Family Scale: An Adaptation for Families of Children With Handicaps

An adapted version of the Impact on Family Scale (IFS), a 33-item rating scale for measuring the impact of the handicapped child on adult family members and siblings, was completed by 49 mothers of children between 36 and 64 months of age enrolled In early intervention programs. The internal consistency coefficient was found to be .86. Correlations of the Adapted IFS total score and IFS factor scores with relevant criterion measures supported the validity of the scores from the adapted scale for measuring the impact of the handicapped child on the family. The results of this study suggest the potential utility of the adapted IFS for assessing the effects of early intervention programs on families.