Impact On Family Scale Research Articles

EVALUATION OF FAMILY IMPACT OF CHILDREN WITH CEREBRAL PALSY AND FAMILY CAREGIVER'S QUALITY OF LIFE, SLEEP QUALITY AND INDIVIDUAL PHYSICAL EDUCATION SATISFACTION: A MIXED STUDY

Purpose: Cerebral Palsy (CP) is a disease that has significant effects on both the child and the family. The objective of this study is to examine the influence of the family, quality of life, sleep quality and individual physical education (IPE) of family caregivers of children with CP. In addition, it is planned to detail the factors affecting their satisfaction through semi-structured individual interviews. Methods: Family caregivers of 55 children diagnosed with CP between the ages of 1 and 15 were included in the study. Demographic information with “Demographic Information Survey”, the functional status of the child's with “Gross Motor Function Classification System (GMFCS)” the impact of the child on the family with “Impact on Family Scale (IoFS)”, caregiver's quality of life with “World Health Organization Quality of Life Scale - Short Form (WHOQOL-BREF) ”, caregiver's sleep quality was evaluated with “ Pittsburgh Sleep Quality Index (PSQI)” and the satisfaction with IPE was questioned with the “Pediatric Quality of Life Healthcare Parental Satisfaction Scale (PedsQL)”. Qualitative data were obtained through semi-structured individual interviews. Results: In our study, GMFCS level was negatively correlated with WHOQOL-BREF (p=0.028) and positively correlated with PSQI (p=0.002). In addition, the IoFS scale correlated negatively (p=0.000) with WHOQoL-BREF and positively (p=0.016) with PSQI. Conclusions: The findings of this study indicate that the physical dependence of the child has a negative impact on the quality of life and sleep quality of caregivers, and that the number of siblings affects parents' satisfaction with the treatment. It is recommended that further information be obtained regarding parents' perceptions of the disease and their individual physical education needs, as a result of semi-structured individual interviews.

Parental Perceptions of the Impact of a Child’s Complex Chronic Condition: A Validation Study of the Impact on Family Scale

The diagnosis of a child’s complex chronic illness may impact family relationships and cohesion. The Impact on Family Scale (IFS) is an instrument used to assess the parental perception of the effects of children’s chronic illness on family life. With a sample of 110 mothers and fathers between the ages of 29 and 50 who have a child with a complex chronic illness, we examine evidence of the validity of the IFS for use in Portugal within this specific family configuration, (1) comparing its factor structure with the original one; (2) assessing its reliability; and (3) evaluating its relationship with life satisfaction and family cohesion/acceptance. As expected, CFA analysis showed that IFS is a one-factor reliable instrument with 12 items (Cronbach’s alpha = 0.910), which are negatively correlated with satisfaction with life (r = −0.229, p = 0.016) and positively correlated with family acceptance and cohesion (r = 0.363; p < 0.001). The results support the validity of the IFS in families with children and adolescents with a complex chronic illness. The implications of the use of this instrument for research and professional practice is analyzed.

Exploring quality of life disparities among 177 families with children affected by cleft lip and/or palate: A comprehensive analysis using the Impact on Family Scale

Objective: This study aimed to assess the quality of life (QoL) of parents/caregivers of children with cleft lip and palate (CLP) using the Impact on Family Scale (IOFS).Methods: Families of children requiring primary or secondary CLP repair were recruited based on the inclusion criteria. The IOFS questionnaire was utilized to assess perceived QoL. Multiple logistic regression was employed to determine factors linked to impacted QoL.Results: Out of the 192 families contacted, 177 participated (92.2%). The patients had a mean age of 8.9 ± 5.4 months, with a majority of families residing in rural areas (67.2%). The questionnaires assessed QoL before surgery, revealing a mean total QoL score of 68.8 ± 19.4, with 49.7% of families experiencing affected QoL. The analysis demonstrated a significant association between the female sex of parents/caregivers and a more impacted QoL (p = 0.018), as well as between the absence of a history of CLP in the family and a more affected QoL (adjusted odds ratio = 3.0; 95% CI: 1.3 – 6.7; p = 0.008).Conclusion: Caring for a child with CLP significantly decreases parents/caregivers’ QoL in all domains. The results emphasize the significance of considering the family history of CLP and the gender of the parents in the comprehensive care of affected families.

Exploring quality of life disparities among 177 families with children affected by cleft lip and/or palate: A comprehensive analysis using the Impact on Family Scale

Objective: This study aimed to assess the quality of life (QoL) of parents/caregivers of children with cleft lip and palate (CLP) using the Impact on Family Scale (IOFS).Methods: Families of children requiring primary or secondary CLP repair were recruited based on the inclusion criteria. The IOFS questionnaire was utilized to assess perceived QoL. Multiple logistic regression was employed to determine factors linked to impacted QoL.Results: Out of the 192 families contacted, 177 participated (92.2%). The patients had a mean age of 8.9 ± 5.4 months, with a majority of families residing in rural areas (67.2%). The questionnaires assessed QoL before surgery, revealing a mean total QoL score of 68.8 ± 19.4, with 49.7% of families experiencing affected QoL. The analysis demonstrated a significant association between the female sex of parents/caregivers and a more impacted QoL (p = 0.018), as well as between the absence of a history of CLP in the family and a more affected QoL (adjusted odds ratio = 3.0; 95% CI: 1.3 – 6.7; p = 0.008).Conclusion: Caring for a child with CLP significantly decreases parents/caregivers’ QoL in all domains. The results emphasize the significance of considering the family history of CLP and the gender of the parents in the comprehensive care of affected families.

The Impact on Families of Children With Congenital Upper Extremity Differences

To investigate the impact on caregivers of caring for a child with congenital upper extremity differences. In this cross-sectional study, caregivers of patients enrolled in the multi-institutional Congenital Upper Limb Difference (CoULD) registry were contacted. Demographic information and the Impact on Family Scale (IOFS), a validated measure of perceived caregiver strain, were collected. Patient-reported outcome measures from the CoULD registry, the Pediatric Outcomes Data Collection Instrument (PODCI), and Patient-Reported Outcomes Measurement Information System (PROMIS) were also analyzed for correlation with IOFS. Two hundred ninety-nine caregivers participated. Factors with significantly stronger impact on family included public insurance; bilateral upper extremity involvement; household income of $20,000-40,000; additional musculoskeletal diagnosis; and a single adult caregiver household. There was a significantly increased subcategory of IOFS-Finance score for distant travel to see the surgeon. Additionally, all categories of the PODCI (upper extremity, mobility, sports, pain, happiness, and global) demonstrated a negative correlation with IOFS. PROMIS upper extremity and peer relations also demonstrated an inverse relationship with IOFS, whereas PROMIS pain interference had a positive correlation with IOFS. The overall IOFS for children with CoULDs was greater than previously reported for children with brachial plexus birth injury, and less than cerebral palsy and congenital heart disease. Caregivers of children with congenital upper extremity differences report a significant impact on family life. Socioeconomic factors, such as economically disadvantaged or single-caregiver households, and clinical factors, such as bilateral upper extremity involvement, correlate with greater family impact. These findings represent opportunities to identify at-risk families and underscore the importance of caring for the whole family through a multidisciplinary approach. Prognostic II.

Parenting stress in families of children with disabilities: Impact of type of disability and assessment of attending paediatricians.

Parents of children with developmental disorders (DD) or disabilities report greater parenting stress than parents of typically developing children. To minimise this stress, stressful factors need to be known and stress needs to be recognised early. The present cross-sectional study aims to systematically assess and compare parenting stress in families of children with various types of disabilities. In addition, the assessment of parenting stress by attending paediatricians will be evaluated. We surveyed 611 parents about their parenting stress at the Children's Development Center (CDC). Three questionnaires, including the German versions of the Parenting Stress Index (PSI) and Impact on Family Scale (IOFS), were used to evaluate parenting stress. Furthermore, attending paediatricians assessed of the child's type of disability and their perception of parenting stress in a separate questionnaire. Fifty-five percent of all parents reported stress at a clinically relevant level, 65% in the child domain and 39% in the parent domain of the PSI. Parenting stress differed significantly across diagnostic categories (p< 0.01) and was associated with childhood disability related issues of behaviour, sleep or feeding issues. Parenting stress was often underestimated by the paediatricians, especially when the children had disabilities perceived as less severe. In one-third of parents with clinically relevant total stress, paediatricians reported low stress levels. Parent-reported financial problems, social isolation, and partnership conflicts were not suspected by paediatricians in ≥85% of cases. Clinically relevant parenting stress was found more often than in comparable studies. An assessment of parenting stress by paediatricians may be complicated by time constraints in medical appointments, the mainly child-centred consultation, or restricted expression of parents' stress. Paediatricians should move from a purely child-centred to a holistic, family-centred approach to treatment. Routine screening of parenting stress using standardised questionnaires could be helpful to identify affected families.

Correlation of continence with long-term patient centered outcomes in children with sacrococcygeal teratoma

PurposeThe purpose of this study is to evaluate the relationship of social continence with patient centered outcomes, such as quality of life, in children with sarococcygeal teratoma (SCT). We hypothesize there is a correlation between social continence and patient-centered outcomes. MethodsA chart review and three surveys (Pediatric Quality of Life Inventory™ (PedsQL™), Baylor Continence Scale (BCS), and Impact on Family (IOF)) were performed for SCT patients who underwent resection at our institution from 2013 to 2018. PedsQL™ assesses quality of life, BCS evaluates global continence, and the IOF scale measures the impact of a child's illness on the family. Pearson correlation was used to examine the relationship between BCS, PedsQL™, and IOF. ResultsEighteen patients were identified with 72% (13/18) participating in the surveys with a median age at time of survey of 4.7 years (range 2.8–7.9). Patients with Altman IV were diagnosed postnatally and had smaller tumors. At the time of survey administration, a majority of children were toilet trained (54%, 7/13). Parents reported urinary incontinence (46%, 6/13) more frequently than bowel incontinence (15%, 2/13). Altman III/IV trended towards worse PedsQL™, BCS, and IOF surveys; however, it was not significant. The BCS correlated with the Total PedsQL™ (ρ = -0.56, p = 0.048) and IOF (ρ = 0.68, p = 0.011). ConclusionChildren with SCT have a correlation between social continence, quality of life, and the impact on family. This study suggests interventions to screen and improve continence in children with SCT could also improve patient centered metrics. Study DesignCross-sectional study Level of EvidenceLevel II, Prognosis Study

Impact of childhood cancer on the family: evidence from Bangladesh

BackgroundThe care of children with cancer creates emotional, financial, and social impacts for their families. Information on the impact of childhood cancer (CC) on the family is scarce in Bangladesh. Thus, the study was set out to assess the impact of CC on the families in the local context. MethodsThis cross-sectional study was conducted from January to June 2018 in three purposively selected tertiary hospitals. All the children diagnosed and treated at those hospitals during the study period were eligible for this study. Children undergoing bone marrow transplantation, or those who were seriously ill, or those transferred to another hospital, or those who died were excluded or whose parents were not willing to participate. A total of 242 children were enrolled in the study and their parents were included in the interview. Measures included socio-demographic attributes, financial burden, personal strain, social impact, mastery, and treatment cost. Informed written consent was obtained from the parents and a face-to-face interview was conducted using a semi-structured questionnaire based on (i) About you and your-family and (ii) the Impact-On-Family (IOF) scale. High scores of the scale correlated to high impact. Medical records were reviewed to collect data on the pattern of CC and treatment costs. ResultsMajor CCs included leukemia (36.0%), blastoma (18.2%), sarcoma (14.9%), and lymphoma (12.4%). The weighted score was highest for mastery (3.63) followed by financial burden (3.33), personal strain (3.27), and social impact (3.21) domains. The difference of IOFS score was significant by family type (p < 0.05), father's occupation (p < 0.05), type (p < 0.01) and duration of cancer (p < 0.01), and treatment cost (p˂0.01). Families adopted diverse coping strategies including changed lifestyle (98.3%), sought social support (86.0%), rely more on religion (98.8%), and reduced family investment (83.9%) to adjust the impact. ConclusionThe impact of CC on the family is evident at many levels. In particular, mean scores of financial burden, personal strain, social impact, and mastery domains of the IOF scale were significantly associated with the employment status of parents, residing place, treatment cost, type, and duration of cancer. The study findings could contribute to devising impact-reducing intervention programs in Bangladesh.

The impact of caring for children with posterior urethral valves.

To investigate and describe factors contributing to the impact of caring for a child with posterior urethral valves and to determine the extent to which families view their care as family-centred, and whether this can affect the impact of care. A cross-sectional, survey-based study involving primary caregivers of children with posterior urethral valves. Caregivers completed the Impact on Family Scale (IOFS) and the Measure of Processes of Care (MPOC). Regression analyses were used to assess the relationship between child-related variables, demographic variables, MPOC and IOFS scores. Thirty-one primary caregivers completed both questionnaires. Caregivers of children with moderate/severe chronic kidney disease (CKD) scored higher on the IOFS compared to those caring for children with mild CKD. Caregivers rated care received highly but reported lower scores in subscales related to information provision. Receiving less respectful and supportive care was significantly associated with lower IOFS scores. The impact of caring for a child with posterior urethral valves is variable and is strongly determined by the severity of the associated CKD. Further research is required to show whether improving family centredness of care can reduce the impact of caring for children with posterior urethral valves.

Validation of the Impact on Family Scale (Spanish Version) and Predictive Variables in Parents of Children with Severe Food Allergy.

Background/PurposeSevere food allergies in children have serious consequences for their daily lives, but also for their families. The aim of the present study was to validate the impact on family scale (IOFS) in families of school-age children with severe food allergies (SFA) in Spain. Design/MethodsA total of 299 families from south Spain were assessed using the IOFS. A factorial analysis was conducted to analyze the construct validity. The reliability of the questionnaire was assessed using the Cronbach's alpha coefficient and the intraclass correlation coefficient. Additionally, a multivariate analysis was conducted to study the association between the impact of the illness on families and some variables. ResultsThe internal consistency of the scale (Cronbach's alpha) was 0.87 (95% CI) and the intraclass correlation coefficient (ICC) was 0.90. Regarding the results of the IOFS, the overall average score was 61.9 (SD = 12.4). The family-social impact subscale obtained the highest score. The number of children and the number of workers within the family showed a significance that was directly proportional to the family impact. ConclusionsThe Spanish version of the IOFS is a reliable and valid tool to assess the impact of severe food allergies on families. In addition, the results point out SFA as a problem with medium-high family impact and important family availability needs. Practice implicationsThe impact on families of severe food allergy of children has become evident, therefore, the healthcare staff should pay close attention to this issue and take the required measures to reduce this impact.

Differences in parents of pediatric liver transplantation and chronic liver disease patients.

With advancements in the treatment of chronic liver disease (CLD), including liver transplantation (LT), quality of life and satisfaction after LT have become an important issue for pediatric patients and their parents. More evidence-based information is needed to describe and assess the impact of pediatric CLD on parents and the satisfaction of parents with treatment to better understand their needs. To assess the satisfaction of parents of pediatric LT patients and that of parents of pediatric CLD patients. During this survey, data were collected from parents of pediatric patients who underwent LT between January 2010 and April 2017 (LT group; n = 91) and parents of pediatric patients with chronic liver disease (CLD group; n = 94). Group comparisons were made based on the pediatric health-related quality of life (PedsQL) health care parent satisfaction scale, impact on family scale (IFS) and demographic characteristics. The PedsQL was administered to parents during a phone interview and the results were used to assess the health care-related satisfaction of parents. The IFS was used to assess the impact of the child's CLD status on the family. Demographic variables such as education level (elementary vs middle vs high vs university), monthly income (low vs middle vs high), and place of residence (village vs town vs city) were compared between CLD and LT parent groups. Finally, PedsQL and IFS results were also analyzed according to demographic variables. A total of 185 parents aged 19 to 65 years were included. There were statistically significant differences between the LT and CLD groups in terms of career (P < 0.001), monthly income (P = 0.016), and education level (P = 0.041). According to the PedsQL results, family inclusion, communication, technical skills, emotional needs, and overall satisfaction were significantly different between the groups; the LT group had consistently higher scores (P < 0.001). Additionally, scores for the IFS parameters of financial impact, familial-social impact, personal strain, and total impact were consistently higher for the LT group (P < 0.001). There were statistically significant relationships between education level, monthly income, and place of residence according to the IFS results but not the PedsQL results. There were inverse relationships between the difficulties that parents experience because of their child's health and education levels, monthly income, and place of residence. However, no relationship was found between education level, monthly income, or place of residence and satisfaction with health care services provided in the hospital according to the PedsQL results. Parents of children who underwent LT were very satisfied with the health care services provided to their children. However, they had more difficulties than parents of children with CLD.

The impact of having a baby with cleft lip and palate on parents and on parent-baby relationship: the first French prospective multicentre study

BackgroundThe objective of this prospective, multidisciplinary and multicenter study was to explore the effect of a cleft lip, associated or not with a cleft palate, on parents, on parent-infant relationship, and on the baby’s relational development. It also highlighted how the type of cleft and the timing of the surgery could impact this effect.Method158 infants, with Cleft lip with or without Palate, and their parents participated in this multicenter prospective cohort. Clinical evaluations were performed at 4 and 12 months postpartum. The impact on the parents and on the parent-infant relationship was evaluated by the Parenting Stress Index (PSI), the Edinburgh Post-partum Depression Scale (EPDS) and the Impact-on-Family Scale (IOFS). The relational development of the infant was assessed using the Alarm Distress Baby Scale (ADBB). The main criteria used to compare the infants were the severity of cleft and the time of surgery.ResultsThe timing of surgery, the type of malformation or the care structure had no effect on social withdrawal behaviors of the child at 4 and 12 months postpartum (ADBB). Furthermore, early intervention significantly decreased maternal stress assessed with the PSI at 4 months. Parents for whom it had been possible to give a prenatal diagnosis were much better prepared to accept the waiting time between birth and the first surgical intervention (IOFS). Higher postpartum depression scores (EPDS) were found for both parents compared to the general population.ConclusionA joint assessment of the mental health of both infants and parents is required in the follow-up of cleft lip and palate. Even if most families are remarkably resilient faced with this major cause of stress, a significant proportion of them could require help to deal with the situation, especially during this first year of follow-up. An assessment of the child’s social withdrawal behaviour and of the parental stress and depression appears useful, in order to adapt care to infant and parent’s needs.Trial registrationClinicalTrials.gov Identifier: NCT00993993. Registered 10/14/2009 <.

NÖROGELİŞİMSEL VE EDİNSEL BEYİN HASARI OLAN ÇOCUKLARIN AİLE ETKİLENİMLERİNİN İNCELENMESİ

Purpose: This study aimed to investigate the family impact of children with congenital andacquired brain injury, the levels of depression in mothers, and the factors that might affect familyfunctioning.Methods: This study included 42 children with brain injury (20 congenital, 22 acquired) and theircaregiver mothers. Impact on Family Scale (IFS) was used to evaluate family impact and the BeckDepression Inventory for the level of depression in the mothers. The Functional Oral Intake Scalefor the status of oral intake of children.Results: This study illustrated that the levels of family impact (z=-1.161, p=0.246) and mothers'depression (z=-0.177, p=0.860) were similar in children with congenital and acquired brain injury.In this study, a relationship was found between the child's feeding position (z=-0.684, p=0.043) andfamily income level (z=5.981, p=0.046) with family impact.Conclusion: The family impact of having children with disabilities may be related to many factors.In order to understand this mechanism, future studies should be planned with a holistic approach.The results of these studies, provide information to be used in the development of interventions for parents of children with disabilities.

The impact of cleft lip and/or palate on parental quality of life: A pilot study

BackgroundCleft lip and/or palate (CL/CP/CLP) is one of the most common congenital anomalies. Children may suffer from a variety of health problems including difficulties with feeding and speech, middle ear problems, hearing loss and associated psychosocial concerns. The extent of impact of this disorder on the parents, however, has not yet been thoroughly evaluated. This pilot study was performed to evaluate the impact of having a child with CL/CP/CLP on the parents' quality of life (QoL) and family functioning and to compare between cleft subgroups. MethodsForty-five parents with children aged 6 months to 6 years with CL/CP/CLP, followed by the multidisciplinary orofacial cleft team of Ghent University Hospital, completed following standardized questionnaires: Impact on Family Scale (IOFS), Family Impact Scale (FIS) and Care-Related Quality of Life Instrument (CarerQoL). Subgroups were compared with diverse unpaired statistical tests. ResultsYounger children (6m-2y) with CL/CP/CLP entail more impact on parental QoL compared to children aged 2-4y old (p=0.04, ε²=0.15/p=0.02, ε²=0.17/p=0.02, ε²=0.17). Families from children with a syndromic cleft also encounter more impact (p=0.04, r=0.32 /p=0.01, r=0.37 /p=0.008, r=0.40/p=0.003, r=0.45). Prenatal orofacial cleft diagnosis is associated with a higher reporting of family conflicts (p=0.04, r=0.32). In case of non-syndromic clefts, families having children with CLP report more family conflicts compared to CL or CP (p=0.02, ε²=0.46). Parental education and number of children within the household showed no significant impact on parental QoL. ConclusionThis cross-sectional study confirms that having a child with CL/CP/CLP impacts the parental QoL. This study was performed as a pilot-study for larger multicentre studies, future development of effective screening tools and identification of subgroups at risk. Long-term multidisciplinary follow-up should involve family-centred support.

Reliability and validity of the pediatric feeding and swallowing disorders family impact scale for Turkish children with cerebral palsy by endoscopic evaluation.

Umay E, Gündoğdu İ, Öztürk EA. Reliability and validity of the pediatric feeding and swallowing disorders family impact scale for Turkish children with cerebral palsy by endoscopic evaluation. Turk J Pediatr 2019; 61: 741-748. The caregivers of children with cerebral palsy (CP) have high mood disorders and stress levels. This study was aimed to conduct validity and reliability of Turkish version of The Pediatric Feeding and Swallowing Disorders Family Impact Scale (PFSDFIS) by using an objective method. This study was performed in our physical medicine and rehabilitation (PMR) clinic between July 2016 and July 2018. This study was performed with 251 children with CP who had complaint of swallowing and/or feeding problems, and their primer caregivers. Cronbach`s alpha and corrected item-total correlations were used to assess internal consistency. Test and retest reliability studies were also conducted. The construct validity was assessed using the dysphagia level defined with flexible fiberoptic endoscopic evaluation of swallowing and Impact on Family Scale (IFS). Total score of T-PFSDFIS was correlated to the dysphagia level by using FEES. Results showed, Cronbach's alpha value of the scale to be 0.821. Corrected item-to-total correlations ranged from 0.729 to 0.911. Test-retest reliability coefficients was calculated with intra-class correlation coefficient (ICC), the total score was 0.989. A negative significant good level correlation was found between the dysphagia level by using endoscopic evaluation and the T- PFSDFIS total score as well as between total scores of IFS and T-PFSDFIS. In subgroup analysis; the lowest value was in normal swallowing and significantly different from all dysphagia levels. In conclusion; this scale is effective in reflecting the influence of caregivers on the severity of dysphagia measured objectively and T-PFSDFIS is a valid and reliable scale for Turkish children with CP.

The Impact on Family of Pediatric Chronic Respiratory Failure in the Home

To assess the family impact of managing severe, chronic respiratory failure (CRF) at home. Better understanding will inform parental counseling and serve as a point of reference for interventions. Families of children with CRF completed the Impact on Family Scale (IFS) and Consumer Assessment of Healthcare Providers and Systems. Using multivariable linear regression, we assessed the relationship between IFS and family, clinical, and utilization characteristics. A total of 118 parents (60%) completed the IFS; 114 parents (58%) completed all measures. The 15-item IFS mean total score was 40 (SD=10) with a possible range of 15-60 (greater scores indicate more impact). Modeling identified a negative association with parent emotional functioning, parent-rated child health, and private insurance only (compared with both private/public), and other family characteristics (eg, parental education, marital status, and income) were not associated with IFS scores. Families of children with CRF are greatly impacted by their child's health. In contrast to other children with special health care needs, family characteristics were not associated with IFS scores, excluding insurance type. These results may reflect more uniform demands and stressors related to CRF. Future research should identify interventions to attenuate the impact of CRF.

The impact of the Ponseti treatment method on parents and caregivers of children with clubfoot: a comparison of two urban populations in Europe and Africa.

PurposeWith the Ponseti treatment method established as the gold standard, children with clubfeet face a prolonged treatment regime that might impact on their families. We aimed to determine how Ponseti treatment influences the lives of parents and caregivers and what coping strategies they use. Secondarily, we aimed to identify any potential differences between two urban referral centres for clubfoot.MethodsA total of 115 parents of children affected with idiopathic clubfoot were recruited and included in two groups: one from the United Kingdom (UK) and the other from South Africa (SA). The participants completed the following three instruments: the Impact on Family Scale (IOFS), the Multidimensional Scale of Perceived Social Support (MSPSS), and the Brief COPE.ResultsDuring the bracing phase, the IOFS showed a trend towards lower scores when compared to the casting phase for both cohorts (p = 0.247 and p = 0.434, respectively). The SA population scored higher than the UK in the MSPSS in both casting (p = 0.002) and bracing phases (p = 0.004) and used coping strategies at a significantly higher level when compared to the UK population (p < 0.05) in both treatment phases.ConclusionThis is the first study to show that Ponseti treatment for clubfoot causes an impact on family function. In SA, perceived social support is higher and coping strategies are used more often than in the UK to deal with the stressful circumstances of treatment.

‘Wondering and waiting’ after obstetrical brachial plexus injury: Are we underestimating the effects of the traumatic experience on the families?

Background Obstetrical brachial plexus injury (OBPI) in children can cause great distress to a family due to uncertain recovery, variability in spontaneous recovery and unclear indicators for surgery. Objective To investigate the impact of having a child with OBPI on the family and whether the Impact on Family Scale (IoFS) can assist in addressing family concerns. Methods A mixed-method (cross-sectional survey and semistructured interviews) study design was used. Results Thirty-eight families of children with OBPI completed the IoFS. Surgery significantly predicted a higher IoFS total impact score (P=0.02). No statistically significant association between the total impact score and severity or age was found, suggesting that impact on family was not dependent on these factors. Themes that emerged from the interviews included traumatic birthing experience, wondering and waiting, and experiencing surgery. Conclusion All families should receive support and acknowledgement of the widespread impact of OBPI.

The Impact on Family Scale: Psychometric analysis of long and short forms in parents of children with epilepsy

Epilepsy in a child or adolescent can have severe psychosocial impact on the whole family and burdens them, especially the parents. As the familial background is essential for the child's coping and the progression of the epilepsy, parental burden should be considered within a comprehensive treatment approach. This study validated the applicability of the Impact on Family Scale (IOFS), a well-established instrument that assesses the strains of families with chronically ill or disabled children, in parents of children with epilepsy. In a sample of 219 parents, the psychometric properties of the original IOFS version (33 items) and two short forms (15 and 11 items, respectively) were examined. Both short forms revealed good reliability (Cronbach's alpha, test–retest reliability), and construct validity was verified by correlations with epilepsy- and burden-related variables. However, exploratory and confirmatory factor analyses indicated superior characteristics of the short form with 11 items (IOFS-11). In conclusion, the IOFS-11 as well as the IOFS-15 proved to be practicable, reliable, and valid tools to assess the impact of childhood epilepsy on family life in research and clinical practice.

'Wondering and waiting’ after obstetrical brachial plexus injury: Are we underestimating the effects of the traumatic experience on the families?

Obstetrical brachial plexus injury (OBPI) in children can cause great distress to a family due to uncertain recovery, variability in spontaneous recovery and unclear indicators for surgery. To investigate the impact of having a child with OBPI on the family and whether the Impact on Family Scale (IoFS) can assist in addressing family concerns. A mixed-method (cross-sectional survey and semistructured interviews) study design was used. Thirty-eight families of children with OBPI completed the IoFS. Surgery significantly predicted a higher IoFS total impact score (P=0.02). No statistically significant association between the total impact score and severity or age was found, suggesting that impact on family was not dependent on these factors. Themes that emerged from the interviews included traumatic birthing experience, wondering and waiting, and experiencing surgery. All families should receive support and acknowledgement of the widespread impact of OBPI.