Parenting stress in families of children with Prader-Willi syndrome.

Prader-Willi syndrome (PWS) is a neurodevelopmental disorder characterized by multiple endocrine, metabolic, respiratory, cognitive, and behavioral/psychiatric symptoms that may lead to severe emotional strain in their caregivers. In this study, we evaluated parenting stress by the Parenting Stress Index-short form (PSI/SF) and parent-reported behavioral symptoms by the Child Behavior Checklist (CBCL/6-18) in families of children with PWS. Sixty-seven home-resident PWS patients and their families were recruited in this study. The patients' mean age was 14.9 ± 8.3 years, and 33 (50.8%) were male. High parenting stress was reported by 41.5% families, as determined by high total stress scores of PSI/SF. The patients in high stress families were significantly older than those in low stress families (18.2 ± 8.0 vs. 12.6 ± 7.8 years, p = .007). CBCL/6-18 was used to evaluate the somatic and neuropsychiatric symptoms of PWS patients aged between 6 and 18 in the subgroup of the 35 families. In this subgroup, 37.1% of families reported high parenting stress. High stress families reported a higher T-score in anxiety/depression, withdrawn behavior, somatic complaints, thought problems, attention problems, and delinquent and aggressive behavior of their children with PWS. After multivariate stepwise logistic regression analysis, the T-score of somatic complaints was the only factor related to high parenting stress, with an odds ratio of 1.279. Our data demonstrated the high care burden of families with PWS and highlighted the importance of having dedicated medical care for both somatic and neuropsychiatric symptoms.

Premature birth: complexities and difficulties in building the mother-child relationship.

AIM: This paper aims to investigate if the dyadic interactive behaviours were influenced by parental stress and feelings both in preterm and full-term mother-child dyads. METHODS: 45 mothers (age = 35.29 ± 5.38) and fathers (age = 36.77 ± 6.89) of preterm infants (GA = 30.25 ± 2.95; BW = 1288.02 ± 488.76), and 36 mothers (age = 32.60 ± 4.56) and fathers (age = 35.54 ± 5.16) of full-term (GA = 39.88 ± 1.38; BW = 3156.39 ± 493.81) were involved. Parents filled out the Impact of Event Scale Revised (IES-R), Profile of Mood States (POMS) and Parenting Stress Index Short Form (PSI-SF) and interactive behaviours (Global Rating Scale) was videotaped after 3 months. RESULTS: Mothers of preterm children showed higher level of Intrusiveness (Mpreterm = 4.07 ± .74, Mfullterm = 4.39 ± .51, t = 2.22, p = .029) and Remoteness (Mpreterm = 4.45 ± .83, Mfullterm = 4.79 ± .34, t = 2.51, p = .015) than mothers of term children. In preterm mothers' lower levels of Sensitivity, higher levels of Intrusiveness, Remoteness and Depression are associated with the presence of negative feelings and parental stress in both parents. Moreover, higher children Distress is associated to parental negative feelings, paternal stress and post-traumatic symptoms. A higher score of parental negative feelings and parental stress predicted lower scores in Global RatingScale dimensions. CONCLUSIONS: Our results underline that preterm birth could be a risk factor for the co-construction of interactive exchanges between mother and premature baby. This study could help practitioners to better consider parental roles and to carry out specific supportive interventions for both parents and children.

Validation of the Parenting Stress Index-Short Form With Minority Caregivers.

OBJECTIVES: There has been little examination of the structural validity of the Parenting Stress Index-Short Form (PSI-SF) for minority populations in clinical contexts in the Unites States. This study aimed to test prespecified factor structures (one-factor, two-factor, and three-factor models) of the PSI-SF. METHODS: This study used confirmatory factor analysis in a sample of 240 predominantly Black and Latino caregivers of children with behavioral difficulties. RESULTS: The three-factor model fit was reasonable, and the criterion validity for the subscale and total scores was good supporting continued cautious use of the PSI-SF for clinical minority populations. CONCLUSIONS: The PSI-SF could be integrated as part of screening and intake assessment procedures, which could allow social work practitioners to make more informed decisions about treatment planning, as well as facilitate conversations with caregivers around identifying sources of stress and developing healthy coping strategies.

Bladder and bowel dysfunction: evidence for multidisciplinary care.

PURPOSE: We examined the symptoms of bladder-bowel dysfunction (ie severity of voiding dysfunction and stool consistency) and psychosocial difficulties in children presenting to the pediatric urology clinic for voiding dysfunction and to the pediatric gastroenterology clinic for functional constipation. MATERIALS AND METHODS: Parents of children seen at the gastroenterology clinic were recruited during the outpatient clinic appointment, and parents of children seen at the urology clinic were randomly selected from the research database and matched to the gastroenterology sample based on age and gender of the child. All parents completed the Dysfunctional Voiding Scoring System, Bristol Stool Form Scale, Pediatric Symptom Checklist and Parenting Stress Index™-Short Form, which assessed severity of voiding dysfunction, stool consistency, level of psychosocial difficulties and level of parenting stress, respectively. RESULTS: Children seen at the urology and gastroenterology clinics did not differ significantly on any of the measures, indicating that the severity of their bladder-bowel dysfunction is similar. However, they had significantly more severe voiding dysfunction, more constipated stool and more psychosocial difficulties than historical healthy controls. Additionally, level of parenting stress was significantly correlated with patient level of psychosocial difficulties and severity of voiding dysfunction. CONCLUSIONS: Patients with bladder and bowel dysfunction represent a homogeneous group that would potentially benefit from a multidisciplinary treatment approach involving urology, gastroenterology and psychology professionals.

Parental Stress in Raising a Child with Developmental Disabilities in a Rural Community in South Africa.

Although acceptable levels of parental stress are experienced by all parents who raise children, this stress is substantially higher among parents who raise children with developmental disabilities. Sociodemographic determinants further exacerbate parental stress among parents in rural communities, which are disadvantaged in many ways. This study aimed to quantify parental stress among mothers and female caregivers of children with developmental disorders and investigate factors associated with such stress in rural Kwa-Zulu Natal, South Africa. A cross-sectional quantitative survey was used, in which the Parenting Stress Index-Short Form (PSI-SF) and a sociodemographic questionnaire was administered to mothers and caregivers who were raising children aged 1 to 12 years old who were living with developmental disabilities. The PSI-SF scores were used, where a total score of ≤84 percentile was categorised as normal/no parenting stress, 85-89 percentile was categorised as high parental stress, and scores of ≥90 were classified as clinically significant. The sample of 335 participants consisted of 270 (80.6%) mothers and 65 (19.4%) caregivers. Their ages ranged from 19 to 65 years, with a mean of 33.9 (±7.8) years. The children were mostly diagnosed with delayed developmental milestones, communication difficulties, epilepsy, cerebral palsy, autism, ADHD, cognitive impairment, sensory impairments, and learning difficulties. The majority (52.2%) of the participants reported very high-clinically significant stress levels (≥85%ile). The four factors that independently and significantly predicted high parental stress were the advanced age of mothers and caregivers (p = 0.002, OR 2.3, 95% CI 1.34-3.95), caring for a child with multiple diagnoses (p = 0.013, OR 2.0, 95% CI 1.16-3.50), non-school enrolment of the child (p = 0.017, OR 1.9, 95% CI 1.13-3.46), and frequent hospital visits (p = 0.025, OR 1.9, 95% CI 1.09-3.44). At the subscale level, child non-enrolment in a school was found to independently predict parent distress (PD) and parent-child dysfunctional interaction (P-CDI). Frequent hospital visits were statistically and significantly associated with the difficult child (DC) and P-CDI subscales. The study established high parental stress in mothers and caregivers raising children with developmental disabilities. Lack of access to school was an independent factor that consistently increased parental stress. There is a need for support and directed intervention programs aimed at supporting mothers and caregivers of children with developmental disabilities, which will enhance their parenting abilities.

Rasch Analysis of the Korean Parenting Stress Index Short Form (K-PSI-SF) in Mothers of Children with Cerebral Palsy.

The purpose of this study was to investigate the psychometric characteristics of the Korean Parenting Stress Index Short Form (K-PSI-SF) for mothers of children with cerebral palsy (CP) by using a Rasch analysis. The participants were 114 mothers of children with CP whose ages ranged from 2.79 to 11.90 years. The K-PSI-SF consists of 36 items, with a 5-point Likert scale grading along three subscales (Parent Distress, Parent-Child Dysfunctional Interaction, and Difficult Child). The response data were analyzed, and we determined the item fitness and item difficulty, rating scale fit, and separation index. The results show that two items did not have the required fitness. After these two items were deleted, the means of the 34 items in two of the subscales were statistically different from those of the original 36 items. Our analysis of the item difficulty identified the need to add easier question items. The 5-point Likert scale used in the questionnaire was found to be appropriate. This significance of this study is that it suggested the need to modify item fitness and difficulty level, as it identified the psychometric characteristics of the K-PSI-SF through a Rasch analysis based on the item response theory.

Parental Stress and Family Quality of Life: Surveying Family Members of Persons with Intellectual Disabilities.

(1) Background. This study assesses the quality of life in families with a member with an intellectual disability using the Family Adjustment and Adaptation Response framework. (2) Methods. The study included 515 Spanish participants whose family members with disabilities range in age from infancy to adulthood. We hypothesized that it is possible to predict parenting stress by paying attention to the meaning families give to themselves and their circumstances while controlling for the impact of other variables such as family capabilities and characteristics of the family member with disabilities. We used the Beach Center Family Quality of Life Scale and the section on Exceptional needs of medical and behavioral support from the Supports Intensity Scale, together with other potential predictors. The subscale on parental stress from the Parenting Stress Index-Short Form was utilized as a criterion measure. (3) Results. Hierarchical multiple regression analysis revealed that 49% of parental stress was predicted by dysfunctional interaction, difficult behaviors, low emotional wellbeing, poor family interaction, as well as kinship as parents, and the severity of both the medical needs and intellectual disability. (4) Conclusions. The stress experienced by those families is mostly predicted by the meaning they give to themselves and their circumstances. Implications of these findings for service delivery are discussed.

Parental Stress and Parental Ratings of Behavioral Problems of Enuretic Children.

Background: Primary monosymptomatic nocturnal enuresis (PMNE) may have a stressful impact on the everyday life of children and parents, and it may represent a cumulative stress factor increasing feelings of "learned helplessness." Methods: The current study investigated parental stress in a group of parents (n = 330) of children affected by PMNE, compared to a group of parents (n = 330) of typical developing children (TDC). In addition, the study evaluated whether parents of PMNE children experience more emotional, social, and behavioral problems in their children, compared to parents of TDC. Finally, the study correlated frequency of enuresis with stress values and Child Behavior Checklist (CBCL) subscales and total stress with CBCL. Both groups were given The Parental Stress Inventory-Short Form (PSI-SF) and the Child Behavior Checklist (CBCL). Results: Parents of PMNE children showed significantly higher stress level than parents of TDC. Nocturnal enuresis, as a demanding clinical condition difficult to control, represents a relevant stress factor. Mothers appeared as more vulnerable to stress than fathers. Parents of PMNE children reported higher behavioral and emotional problems, compared to reports of parents of TDC. PMNE children appeared to their parents as having lower competency in social activities, school performance, and social relationships than TDC. Moreover, they were rated as more withdrawn, anxious-depressed, more aggressive, inattentive, and with more somatic complaints than healthy children. It was always the mother who rated a significantly higher number of emotional, social, and behavioral problems compared to fathers. Correlational analysis showed that the higher the frequency of enuresis, the greater the parental stress level, the lower the social activities, school performance and relational competencies and the higher the emotional, social and behavioral problems in children, according to the parents' evaluations. The greater the parental stress level, the lower the competencies rated and the higher the behavioral problems detected by parents. Conclusion: The physicians who deal with PMNE children have taken into account the stressful role and emotional dimensions of this clinical condition, both for children and mothers, in order to improve clinical management. Psychological support is needed for parents, and mothers especially, for a more functional stress management related to the PMNE.