Caregiver Strain Questionnaire Research Articles

Validation of a German version of the caregiver strain questionnaire-short form 11 (CGSQ-SF11)

ObjectiveCaring for a child, particularly one with special healthcare needs, is a demanding task that can lead to the experience of caregiver strain. This in turn has an effect on the caregiver’s mental health, as well as on the child and his or her treatment. To enable the identification of afflicted parents, this study aims to provide a German version of the Caregiver Strain Questionnaire–Short Form 11 (CGSQ-SF11) and to examine its factor structure and psychometric properties.MethodsData from 698 caregivers were included in the analyses. Caregivers completed the CGSQ-SF11 along with measures of parenting stress (PSI-SF), stress (PSS-10), anxiety (GAD-7), depression (PHQ-8), family-related quality of life (FLQ), and social desirability (SES-17) as additional instruments for validation. A two-week follow-up questionnaire included only the CGSQ-SF11. Exploratory factor analysis followed by a confirmatory factor analysis was conducted for parents of children with and without special healthcare needs, separately. Further analyses examined the validity and reliability of the instrument.ResultsFor parents of children with special healthcare needs, a three-factor structure (objective, internalized subjective, externalized subjective strain) with a second-order factor (caregiver strain) was supported. For parents of children without special healthcare needs, a similar three-factor structure was found, although the second-order factor was not supported. Measurement invariance between the two groups was not confirmed. Internal consistency, test-retest reliability, and validity were largely supported in both groups.ConclusionsThe results indicate that the German version of the CGSQ SF-11 is a valid and reliable questionnaire for measuring caregiver strain.

A family perspective for the mechanism of parent-child conflict on maternal anxiety in Chinese children with autism

BackgroundMothers of children with autism reported higher levels of anxiety than mothers of typical children. This study revealed the relationship between parent-child conflict, children’s problem behavior, parenting stress, and maternal anxiety from the perspective of the relationship within the family.MethodsThe State-Trait Anxiety Inventory (STAI) and Caregiver Strain Questionnaire (CGSQ) were used to measure maternal anxiety and parenting stress respectively from 102 mothers of children with autism. We also collected information on parent-child relationships and children’s problem behaviors by using the Child-Parent Relationship Scale (CPRS) and Conners Parent Symptom Questionnaire (PSQ).ResultsParent-child conflict positively predicted state and trait anxiety in mothers of children with autism. The severity of children’s psychosomatic disorders fully mediated the positive association between parent-child conflict and state-trait anxiety in mothers of children with autism. Parenting stress significantly moderated the impact of parent-child conflict on maternal state anxiety and trait anxiety.ConclusionIn the case of children with autism spectrum disorders, parent-child conflict can directly affect maternal anxiety levels, especially when mothers have low levels of parenting stress. Parent-child conflict can also affect children’s problem behaviors and thus indirectly affect maternal anxiety. Therefore, this study is of great significance for the alleviation of anxiety of mothers of autistic children and the family intervention for the early rehabilitation of autistic children.

Factor structure, internal consistency, and construct validity of the Caregiver strain questionnaire in Latinx families.

Caregiver strain or stress directly related to caring for a youth with emotional and/or behavioral problems may be an important and understudied cultural factor associated with mental health disparities among Latinx families. Caregiver strain is a highly relevant construct for research questions focused on the identification of youth's mental health needs, family-level impacts of youth mental health problems, and utilization of youth mental health services. Unfortunately, there is a dearth of research on measures of caregiver strain and the psychometric properties of existing measures in Latinx samples. This study examined the structural and construct validity of the English version of the Caregiver Strain Questionnaire (CGSQ) with a sample of United States-based Latinx caregivers of youths ages 6-18 (N = 598). Confirmatory factor analysis showed that the original three-factor model of caregiver strain was evidenced in this sample. Internal consistency analyses and a poor factor loading led to the elimination of one item. The factor structure held after item removal. Significant associations between each dimension of caregiver strain with youth internalizing/externalizing symptom severity and utilization of youth mental health services provided evidence of construct validity (i.e., psychological counseling, telepsychology, parenting classes). Results provide important evidence of the psychometric properties of the English CGSQ in a Latinx sample and support its use in future research aimed at unpacking mental health disparities among Latinx youth and families. Researchers should translate and validate the CGSQ in Spanish to increase the utility of this measure for research with Latinx families.

Improvement in quality of life with continuous positive airway pressure outweighs the treatment burden in children with obstructive sleep apnea.

Continuous positive airway pressure (CPAP) for treatment of obstructive sleep apnea (OSA) may pose a significant burden on families. We assessed the impact of CPAP for children on quality of life (QOL) and caregiver treatment burden. Prospective cohort study of children commencing outpatient CPAP in a specialist sleep centre 2020-2022. Questionnaires regarding sleep-related symptoms (PROMIS Pediatric Sleep Disturbance and Sleep-Related Impairment), QOL (OSA-18, QI-Disability), caregiver burden (Caregiver Strain Questionnaire) and overall health impact (Glasgow Children's Benefit Inventory) were completed by caregivers at CPAP commencement and 6 weeks later. Twenty-sixpatients completed follow-up (7 female; median age 11.4 year, baseline obstructive apnea hypopnea index 10.3/h; 77% overweight or obese, 73% comorbidity other than obesity). OSA-related QOL (OSA-18) significantly improved at follow-up (p < 0.01), as did child general QOL (p < 0.001), sleep disturbance (p < 0.01) and sleep-related impairment (p < 0.001). Caregivers mostly rated CPAP as beneficial to their child's health but 19% rated CPAP as harmful or having no effect. Caregiver strain reduced at follow-up (p < 0.001) and benefit outweighed inconvenience (p < 0.0001) in 81%. CPAP adherence was correlated with overall health impact (r = 0.67, p < 0.01) but not with caregiver rating of inconvenience. CPAP resulted in improvements in QOL and sleep-related symptoms, and reduced caregiver strain. Perceived benefits outweighed the burden of treatment for most but not all families. CPAP adherence was moderately correlated with family-reported measures of benefit but not related to perceived inconvenience. This study provides reassuring evidence regarding the benefits and impacts of CPAP for children, many of whom already have complex health care needs.

Caregiver Strain and its Associated Factors in Autism Spectrum Disorder in Karachi, Pakistan.

Todetermine the frequency of caregiver strain and its associated factors in Autism Spectrum Disorder (ASD) at a tertiary care teaching hospital in Karachi, Pakistan. An analytical cross-sectional study. Place and Duration of the Study: Psychiatry inpatient and outpatient units at The Aga Khan University Hospital, Karachi, Pakistan, from December 2018 to December 2019. The study participants were caregivers of ASD. Data were collected from the inpatient and outpatient departments using Caregiver Strain Questionnaire (CGSQ), and a demographic questionnare. Data were analysed using descriptive and inferential analysis. A total of 76 caregivers participated in the study. Among them, 61 (80.3%) were females and 15 (19.7%) were males, with mean age of 37.09±6.91 years. The overall caregiver strain (both subjective and objective) was reported to be severe by 11.8%, moderate by 47.4% and low by 40.8%. About 50% of the participants had a low objective strain on CGSQ whereas 59.2% of the participants subjectively felt the strain to be at moderate level. An association was found between the gender of the participants and subjective strain (p=0.016), and gender with internalised subjective strain (p =0.002). Parentingof a child with ASD involves challenges and demands support. This study supports the recommendation that the caregivers need access to appropriate means to channelize their strain and manage their role productively. Autism, ASD, Stress, Burden, Caregiver, CGSQ, Pakistan.

Comparison of Three Versions of the Caregiver Strain Questionnaire (CGSQ): Clinical &amp; Research Implications

Abstract Date Presented 04/21/2023 This cross-sectional study compares scores on three versions of the Caregiver Strain Questionnaire (CGSQ) using repeated-measures analysis of variance. Practitioners should consider the balance of respondent burden and scale validity when using clinical questionnaires. Primary Author and Speaker: Ho Ching Lam Additional Authors and Speakers: Emily Campi Contributing Authors: Katherine Hayes, Grace Baranek

Psychometric Properties of the Caregiver Strain Questionnaire in a Chinese Sample of Caregivers of Children with Autism Spectrum Disorder.

The Caregiver Strain Questionnaire assesses the three dimensions of caregiver strain, namely the objective, subjective externalized and subjective internalized strain. It was validated among caregivers of children with Autism Spectrum Disorder (ASD) in the United States and Mainland China with promising psychometric properties.This study aimed to develop and validate the Chinese (traditional script) version of the Caregiver Strain Questionnaire (C-CGSQ) among 198 caregivers of children with ASD in Hong Kong. The C-CGSQ showed excellent internal consistency (α = 0.958) and test-retest reliability (Spearman's r = 0.966). Concurrent, convergent, divergent validity and a three-factor structure (consistent with previous studies) were established. The C-CGSQ demonstrated promising psychometric properties in measuring caregiver strain among caregivers of Chinese ASD children in Hong Kong.

Impacto da protetização auditiva na qualidade de vida do adulto com deficiência auditiva: revisão de escopo

ABSTRACT Purpose To verify the benefits of hearing aids in the quality of life of adults with hearing loss. Research strategy Scoping review guided by PRISMA recommendations. Selection criteria with the help of the keywords “hearing aids”, “hearing aid”, “cochlear implant”, “speech therapy”, “hearing impairment”, “hearing loss”, “quality of life”, and their respective in English and Spanish in the virtual databases: LILACS, SciELO, PubMed, SCOPUS, Web of Science and Open Grey. Qualitatively analyzed. Results 1,312 records were identified and six articles were selected, with a hearing aided population from 18 to 92 years old, from both genders, cochlear implant and individual sound amplification device users. Questionnaires were used (assessment of expectations of adults/elderly users of hearing aids, International Outcome Inventory For Hearing Aids, Nijmegen Cochlear Implant, Satisfaction, Caregiver Strain Questionnaire, Relative to the Index, World Health Organization Quality of Life-bref, Glasgow Health Status Inventory, Abbreviated Profile of Hearing Aid Benefit, Cochlear Implant Quality of Life and scales (Care Giving Burden Scale), Denver Quantified and visual analog). The results indicated a better quality of life in the domains tested, both in the view of deaf adults and their partners. Conclusion Despite the heterogeneity of the quality of life protocols used in the selected studies, it was possible to verify that hearing aids increase the quality of life of adults with hearing loss.

O011 Effect of Continuous Positive Airway Pressure on Quality of Life and Treatment Burden in Children with Obstructive Sleep Apnoea

Abstract Introduction Increasing numbers of children with obstructive sleep apnoea (OSA) require treatment with continuous positive airway pressure (CPAP). We aimed to assess the impact on quality of life (QOL) and treatment burden for caregivers of children requiring CPAP. Methods Prospective study of children commencing outpatient CPAP in a tertiary sleep unit 2020-2022. Questionnaires regarding sleep-related symptoms (PROMIS Pediatric Sleep Disturbance and Sleep-Related Impairment), QOL (OSA-18, QI-Disability), caregiver burden (Caregiver Strain Questionnaire) and overall health impact (Glasgow Children’s Benefit Inventory) were completed by caregivers at commencement of CPAP and 6 weeks later. Progress Complete data available to date in 24 children (6F; median age 12.5y, range 6-18y; median OAHI 9.2/hr; median BMI 30.7). OSA-related QOL significantly improved at follow-up (OSA-18 total and domain scores all p&amp;lt;0.001). There were significant improvements in child general QOL (p&amp;lt;0.0001), sleep disturbance (p&amp;lt;0.01) and sleep-related impairment (p&amp;lt;0.001). Caregivers rated CPAP as beneficial to their child’s general condition (mean 30, where maximum harm -100, maximum benefit +100). Caregiver strain reduced at follow-up (p&amp;lt;0.001) and benefit outweighed inconvenience (p&amp;lt;0.0001). 3 caregivers scored inconvenience higher than benefit; 1 scored them equally. 1 caregiver rated CPAP harmful and 3 caregivers reported no effect on their child’s general health. Outcome CPAP results in significant improvements in QOL and sleep-related symptoms in children with OSA, and reductions in caregiver strain. Perceived benefits generally outweighed the burden of treatment, but not for all families. Further analysis will investigate how the balance of benefit to burden relates to adherence and the effect of co-morbidities.

Caregiving and Confidence to Avoid Hospitalization for Children with Medical Complexity

To test associations between parent-reported confidence to avoid hospitalization and caregiving strain, activation, and health-related quality of life (HRQOL). In this prospective cohort study, enrolled parents of children with medical complexity (n=75) from 3 complex care programs received text messages (at random times every 2weeks for 3months) asking them to rate their confidence to avoid hospitalization in the next month. Low confidence, as measured on a 10-point Likert scale (1=not confident; 10=fully confident), was defined as a mean rating <5. Caregiving measures included the Caregiver Strain Questionnaire, Family Caregiver Activation in Transition (FCAT), and caregiver HRQOL (Medical Outcomes Study Short Form 12 [SF12]). Relationships between caregiving and confidence were assessed with a hierarchical logistic regression and classification and regression trees (CART) model. The parents were mostly mothers (77%) and were linguistically diverse (20% spoke Spanish as their primary language), and 18% had low confidence on average. Demographic and clinical variables had weaker associations with confidence. In regression models, low confidence was associated with higher caregiver strain (aOR, 3.52; 95% CI, 1.45-8.54). Better mental HRQOL was associated with lower likelihood of low confidence (aOR, 0.89; 95% CI, 0.80-0.97). In the CART model, higher strain similarly identified parents with lower confidence. In all models, low confidence was not associated with caregiver activation (FCAT) or physical HRQOL (SF12) scores. Parents of children with medical complexity with high strain and low mental HRQOL had low confidence in the range in which intervention to avoid hospitalization would be warranted. Future work could determine how adaptive interventions to improve confidence and prevent hospitalizations should account for strain and low mental HRQOL.

Assessment of role strain among family caregivers of adult patients with cancer at a national referral hospital in Kenya.

Globally, cancer incidence is on the increase and cancer care is complex, psychologically, physically and financially draining. Family caregivers of patients with cancer in low- and middle-income countries not only face enormous challenges in having their patients access comprehensive cancer treatment services but also the critical and complex roles that they play greatly predispose them to role strain. Role strain is multifaceted and encompasses physical, psycho-social and financial strain. Therefore, this study aimed to assess the level of role strain among the family caregivers of patients with cancer and ensure appropriate referral to care and support services. The study adopted cross-sectional design involving 255 systematically sampled family caregivers of adult patients attending Kenyatta National Hospital outpatient cancer treatment clinic. Quantitative data from Modified Caregiver Strain Index tool and questionnaire was analysed by deriving descriptive statistics and data was presented by use of tables and figures. SPSS software version 25 was utilized in data analysis. From the study findings, the family caregivers who had mild, moderate and severe role strain were 25.9%, 44.3% and 29.8%, respectively. Role strain was prevalent among family caregivers and this, therefore, calls for healthcare practitioners to assess all family caregivers of adult patients with cancer for role strain and appropriately refer those experiencing moderate to severe strain for psychological counselling, social and financial support.

IMPROVEMENTS IN EMOTIONAL LABILITY WITH DELAYED-RELEASE AND EXTENDED-RELEASE METHYLPHENIDATE TREATMENT IN CHILDREN WITH ADHD

Emotional lability (EL) is common in individuals with ADHD, with reported prevalence rates ranging from 38% to 75%. Pharmacologic treatments for ADHD have been shown to improve EL with modest effect sizes. This post hoc analysis examined the effect of HLD200, an evening-dosed delayed-release and extended-release methylphenidate (DR/ER-MPH; tradename: JORNAY PM®), on EL in children (6-12 years) with ADHD in 2 randomized, double-blind, phase 3 trials (HLD200-107 [NCT02493777] and HLD200-108 [NCT02520388]). EL was measured with the 3-item Connors’ Global Index–Parent (CGI-P) EL subscale, which was recorded weekly in the 6-week, open-label phase of HLD200-107, and at baseline and study endpoint (Week 3) in HLD200-108. In HLD200-107, mean scores were compared to baseline at each week using paired t test (N = 117). In HLD200-108, mean scores in the DR/ER-MPH (n = 79) and placebo (n = 76) groups at Week 3 were compared using ANCOVA analysis. Correlations were determined between CGI-P EL scores and the following measures/items: Clinical Global Impression–Severity (CGI-S), CGI–Improvement (CGI-I), Caregiver Strain Questionnaire (CGSQ), and the “arguing/struggling” items in the Morning (item 3) and Evening (item 8) subscales of the Parent Rating of Evening and Morning Behavior–Revised (PREMB-R) scale. In HLD200-107, CGI-P EL scores improved after 1 week of DR/ER-MPH treatment and remained improved vs baseline in each week (p < 0.0001). In HLD200-108, CGI-P EL scores were significantly improved after 3 weeks of DR/ER-MPH treatment compared to placebo (p < 0.01). Significant positive correlations (p < 0.005) were found between CGI-P EL scores and CGSQ, CGI-S, CGI-I, and the arguing/struggling items in both the Morning and Evening subscales of the PREMB-R. DR/ER-MPH treatment improved EL scores in two phase 3 trials of children aged 6-12 years with ADHD. EL was positively correlated with ADHD symptoms and functional impairment in children with ADHD and with strain on caregivers. Due to its pharmacokinetic profile and dose-dependent duration of effect that can provide consistent treatment effects from early morning to late afternoon/evening, DR/ER-MPH is predicted to be an effective treatment for ADHD patients with EL.

Testing the Feasibility of a Nursing Intervention Focusing on Family Management for Caregivers of Children with Autism

Objective: This pilot study aimed to investigate the feasibility and effects of a nursing intervention focusing on family management for caregivers of children with autism.Material and Methods: Five primary caregivers of children with autism, who visited a hospital in Vietnam were recruited by convenience sampling. All participants were parents, with mean age of 33.40 (+5.46) years, who attended weekly family-management intervention for four consecutive weeks. The intervention was adapted from the Building on Family Strengths program and guided by the Family Management Style Framework. The Beach Center Family Quality of Life Scale and the Caregiver's Strain Questionnaire were used to measure outcomes at three-point times, namely, baseline (week 0), post-intervention (week 4), and follow-up (week 8). Descriptive statistics and Friedman test were used in data analysis .Results: The age of children with autism was from 4-8 years old (M=5.60). The findings revealed that the participants attended all implementation sessions without dropping out. Significant positive changes in the quality of family life and the burden of the caregivers were found among the participants after receiving the intervention.Conclusion: The family-management intervention was feasible and beneficial to family caregivers of children with autism in Vietnam. Future studies should explore the effectiveness of this intervention in randomized controlled trials with a larger sample size. This intervention would be more appropriate as integral component in the services for family and children with autism.

Psychometric properties of the Caregiver Strain Questionnaire among Chinese parents of children with ADHD or ASD

BackgroundThere is an urgent need in clinical practice to measure the stress of parenting. The Caregiver Strain Questionnaire (CGSQ) was found to be useful to measure parenting stress, but it...

Predictors of Caregiver Strain for Parents of Children with Autism Spectrum Disorder.

Parents of children with autism spectrum disorder (ASD) face higher levels of caregiver strain compared to parents of children with other disabilities. This study examined child clinical features that predict high levels of caregiver strain for 374 parents of children with ASD. Caregiver strain was measured using the Caregiver Strain Questionnaire (CGSQ) objective, subjective internalized, and subjective externalized subscales. Confirmatory factor analysis indicated an acceptable fit for the original CGSQ three-factor solution. The strongest child predictors across CGSQ subscales were: disruptive behavior for objective strain, autism severity and disruptive behavior for subjective internalized strain, and oppositional behavior and hyperactivity for subjective externalized strain. Individualized interventions that attend to specific elements of parental strain may reduce strain and improve family wellbeing.

Impact of Youth Problem Type on Specific Dimensions of Caregiver Strain in Latino Families

Caregiver strain is directly impacted by youth symptom severity and is a robust predictor of youth mental health service utilization. A closer examination of caregiver strain may provide important insights into understanding mental health disparities as they affect Latino families. This study examined the impact of youth problem type on specific dimensions of caregiver strain in Latino families. Data from 337 Latino caregivers that participated in the Patterns of Care Study was used in a cross-sectional examination of the relationship between youth emotional/behavioral problems and caregiver strain. Caregiver strain was measured using the Caregiver Strain Questionnaire. Youth emotional/behavioral problems were assessed via caregiver ratings on the Child Behavior Checklist. Path analyses were conducted and used sampling weights to account for the complex survey design of the study. Multivariate analyses revealed that youth externalizing problems were significantly and positively associated with subjective internalized and externalized caregiver strain, but not with objective caregiver strain. Youth internalizing problems were associated with objective and subjective internalized caregiver strain, but not with subjective externalized strain. Youth sex was associated with caregiver subjective internalized strain and objective strain. Youth age was positively associated with subjective externalized caregiver strain. This study emphasizes the significance of the relationship between youth problem-type and caregiver strain. It also highlights caregiver strain as an important point for assessment and intervention which, if appropriately targeted, may contribute to the reduction of health disparities and unmet mental health need for Latino youth.

Caregiver strain among biological, foster, and adoptive caregivers caring for youth receiving outpatient care in a public mental health system

Caregivers of children with mental health disorders often report high levels of stress. Although children in the child welfare system have high rates of mental health problems, to date, little is known about the stress experienced by foster and adoptive caregivers. The purpose of the present study was to examine differences in both internalized (e.g., worry and guilt) and externalized (e.g., anger and resentment) caregiver strain among biological, foster and adoptive caregivers, and assess the degree to which characteristics of the caregivers and the children in their care impact strain. Caregivers of youth under age 18 who were receiving treatment in a publically-funded mental health system completed the Caregiver Strain Questionnaire (CSQ), along with the Youth Services Survey for Families (YSSF) which has questions about the youth’s functioning and the mental health care he or she is receiving. A total of 1828 caregivers returned surveys that were eligible for analyses. Generalized Estimating Equations were used examine associations between caregiver type and internalized and externalized strain while controlling for caregiver demographics and social support, and youth demographics, functioning, and time in treatment.Results show that foster and adoptive caregivers reported experiencing less internalized strain than biological caregivers. Caregiver type was not significantly related to feelings of externalized strain. Several additional caregiver and youth characteristics were associated with both types of strain, and caregivers with higher levels of social support experienced less strain. Providers working with children with mental health disorders, particularly those in the child welfare system, should assess families for caregiver strain and provide and/or facilitate supports for caregivers with high levels of stress. Finally, additional research is needed to identify which types of interventions may be most effective for alleviating caregiver strain.

Beyond changing diapers: stress and decision-making among parents of girls with congenital adrenal hyperplasia seeking consultation about feminizing genital restoration surgery

The impact of having a child with atypical genitalia due to a life-threating chronic medical condition like congenital adrenal hyperplasia (CAH) is poorly understood. The aim of the study was to determine parental stress and impact of CAH on parental decisions, including decisions regarding female genital restoration surgery (FGRS). The authors surveyed consecutive parents of girls with CAH ≤3 yearspresenting at a tertiary referral center for FGRS consultation (2016-2019). The survey was developed by three families of daughters with CAH and six clinicians. Nine potentially stressful past experiences were rated on a 6-point Likert scale ('not at all' to 'extremely' stressful). Overall parental stress and strain (broader negative consequences) were reported using validated instruments (Perceived Stress Scale and Caregiver Strain Questionnaire Short Form, respectively). Impact of CAH on past decisions about childcare, social interactions, and who changes diapers were also assessed. Non-parametric tests were used for analysis. Twenty-nine parents (median age: 32years) of 22 consecutive children participated (Prader 3/4/5: 59.1%/36.4%/4.5%). After the study, 20 girls (90.9%) underwent FGRS at a median age of 8 months. The most stressful experiences werehaving an adrenal crisis ('very much' stressful), waiting for the CAH diagnosis, and making sense of the diagnosis (both 'quite a bit') (Figure1). Remaining issues were 'somewhat' stressful. Deciding whether to proceed with FGRS was ranked as the least stressful issue. Overall parental stress was similar to overall stress previously reported by spousal caregivers of stroke or heart failure survivors (P≥0.15). Overall parental strain was similar to parents of adolescents receiving mental health counseling (P=0.77). Congenital adrenal hyperplasia impacted decisions about babysitting, daycare, who changed diapers, and choosing a pediatrician (P≤0.02), but did not impact parental social interactions (P≥0.11). Diapers were typically changed by parents (100.0%) and grandmothers (50.0%). Parents anticipated that some individuals currently not allowed to change diapers would be allowed after FGRS: grandfathers (+18.2%), aunts/uncles (+27.3-32.8%), cousins (+18.2%), and family friends (+45.5%). The authors present the first assessment of parental stress with respect to different aspects of care of a daughter with CAH. Larger studies are required to determine if the parental stress associated with these experiences varies over time and how these stressors rank relative to each other through the child's development. Parents experience multiple stressors after having a daughter with CAH. Parental stress surrounding a decision about FGRS appears less severe than events pertaining to the diagnosis and medical management of CAH. Congenital adrenal hyperplasia impacts multiple parental decisions.

Factors influencing caregiver strain among foster, kin, and adoptive parents

ABSTRACTA better understanding of how to support resource (foster, kinship, and adoptive caregivers) is needed to ensure high-quality home-based care for children who cannot reside safely in their homes. Using the Caregiver Strain Questionnaire, this study examined factors that predicted the extent to which caregivers experienced Objective Strain (the disruption of family routines and financial burden) and Subjective Strain (feelings of guilt, anxiety, and fatigue). Regression analyses suggest that resource parents who are caring for children who need mental health services experience higher levels of stress than other parents. Factors that mitigate strain include access to quality mental health services provided by child welfare and mental health professionals who are adoption-competent and trauma-informed, and the provision of adequate financial support. Findings suggest that supports from skilled service providers are critical for preventing stress and burnout in resource parents.

Sensory Features and Family Functioning in Families of Children With Autism and Developmental Disabilities: Longitudinal Associations.

Children with autism spectrum disorder (ASD) and other developmental disabilities (DD) commonly display unusual responses to sensory input. Previous work has suggested concurrent associations linking sensory features with aspects of family functioning, including activity participation and caregiver strain. What is unknown, however, is the extent to which sensory features affect family functioning over time, as well as the influence of received services on these relationships. To assess hypothesized longitudinal associations between sensory features and family functioning and examine interactions by group and service usage (i.e., educational and therapy services). Multigroup longitudinal observational study. Community. A volunteer sample of 81 children (50 with ASD, 31 with DD; 76% male), ages 2-12 yr, and their caregivers participated in assessments at two points, 3.3 yr apart on average. Key measures included the Sensory Experiences Questionnaire, Sensory Profile, Sensory Processing Assessment for Young Children, Tactile Defensiveness and Discrimination Test-Revised, Caregiver Strain Questionnaire, and Home and Community Activities Scale. We also measured the amount of time children received educational and therapy services. Regression analyses confirmed long-term associations linking sensory features with aspects of activity participation and caregiver strain in this population; group and service usage interactions were also identified. Sensory features can affect the everyday experiences of both children and caregivers. It is important for practitioners to understand the potentially enduring effects of children's sensory features on family functioning so as to begin to identify supportive interventions with more optimal long-term effects.