Disability and caregiver burden: Unique challenges in a developing country.

PURPOSE: This study aimed to identify factors, including degree of disability, that contribute to the caregiver burden of raising children with cerebral palsy in Sri Lanka. METHODS: Participants were caregivers of children with cerebral palsy attending the pediatric neurology clinic of the only tertiary care center in southern Sri Lanka. The locally validated Caregiver Difficulties Scale (CDS) was administered, and demographic information was obtained in a structured interview. Disability data was accessed through the medical record. RESULTS: Of 163 caregivers who participated in this study, 133 (81.2%) demonstrated a moderate to high level of burden, and 91 (55.8%) were at high risk for psychological burden. In the bivariate analysis, caregiver burden significantly correlated with degree of physical disability based on the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS), the presence of medical co-morbidities, and having two or more children. However, only the GMFCS level and number of children remained significant predictors of caregiver burden after controlling for confounding effects. CONCLUSION: Raising a child with cerebral palsy in Sri Lanka is likely to cause caregiver burden, particularly if they have a high level of disability or one or more siblings. Monitoring caregiver burden as part of routine cerebral palsy management is important, which allows targeting psychosocial support to families most in need.

The Chinese version of the Caregiver Difficulties Scale: Psychometric evaluation.

BACKGROUND: Evaluating caregiver burden and its health impact is an essential component of long-term care plan for children with disabilities; the Caregiver Difficulties Scale (CDS) has high conceptual sensitivity. The aim of this study was to adapt the CDS to Chinese and investigates the psychometric properties of this tool. METHODS: The study was carried out among caregivers of children with cerebral palsy (n = 194). The CDS, Caregivers Burden Inventory (CBI) and World Health Organization Quality of Life-BREF (WHOQOL-BREF) were used for data collection. Twenty experts were consulted to evaluate the content validity of the scale. The confirmatory factor analysis was conducted to measure the construct validity of CDS. The Spearman correlation coefficients were calculated among CDS, CBI and WHOQOL-BREF to examine the convergent validity and discriminant validity. The reliability was evaluated by examining internal consistency and test-retest reliability. RESULTS: The result of expert consultation showed that the S-CVI was 0.894 and the I-CVI ranged from 0.70 to 1.00. The fit indices showed that the original correlated four-factor model of CDS was adequate: χ2 = 268.397; df = 243; χ2 /df = 1.105; RMSEA = 0.023; CFI = 0.985; NNFI = 0.869; TLI = 0.982; IFI = 0.986. The score of CDS was positively strong associated with the scores of CBI (r = +0.764); negatively correlating with the scores of WHOQOL-BREF (r = -0.627). The Cronbach's alpha was 0.840; intraclass correlation coefficient (ICC) value was 0.843. CONCLUSIONS: The Chinese version of the CDS is a valid and reliable tool to evaluate burden for caregivers of children with CP in China.

Perceptions on Diet and Dietary Modifications during Postpartum Period Aiming at Attenuating Progression of GDM to DM: A Qualitative Study of Mothers and Health Care Workers.

BACKGROUND: Gestational diabetes mellitus (GDM) is a global concern. GDM mothers have a 7-fold relative risk of developing type 2 diabetes mellitus (T2DM) in their later life. User-friendly and culturally acceptable dietary interventions can minimize this risk. Therefore, this study aims at exploring the perceptions of GDM mothers and health care workers regarding factors that influence postpartum dietary practices aimed at attenuating the trajectory from GDM to DM. METHODS: The study was conducted in selected MOH areas in three districts of Sri Lanka. Six focus group discussions were conducted with thirty mothers with a history of GDM and six in-depth interviews with six health care workers. The phenomenon of interest was to obtain inputs of two stakeholder groups on healthy food habits of GDM mothers during the postpartum period. Framework analysis was used to analyse the data. Data were coded using the analytical framework, abstracted from transcripts, and summarized verbatim in Microsoft Excel in a matrix comprised of one row per participant and one column per code. Finally, the matrix was reviewed intensely and themes were generated. RESULTS: Overall, seven themes emerged from both cases: (1) myths and traditions specific to the postpartum period, (2) lack of motivation, (3) time pressure, (4) financial barriers, (5) negligence of mothers and families, (6) lack of awareness regarding GDM and its postpartum dietary recommendations, and (7) cultural barriers. CONCLUSIONS: This study provides an insight into the existing knowledge, common practices, and attitudes regarding food habits among postpartum mothers with a history of GDM. Since the postpartum period is unique, identifying barriers is crucial when introducing dietary modification protocols in order to prevent or attenuate the progression of GDM to T2DM in these mothers. The knowledge gained will be used to introduce feasible, scientifically sound, and culturally acceptable postpartum dietary recommendations for GDM mothers.

Caregiver Difficulties Scale (CDS): Translation and Psychometric Evaluation Among Iranian Mothers of Cerebral Palsy Children.

The aim of this study was to investigate of psychometric properties of the Caregiver Difficulties Scale (CDS) for Iranian caregivers of children with cerebral palsy (CP). After a forward-backward translation, the Persian version of CDS (P-CDS) was administered to 151 Iranian mothers of CP children. The confirmatory factor analysis (CFA) was applied to measure the factor structure of P-CDS. The reliability was evaluated by examining internal consistency and test-retest method over a 2-week period using Cronbach's alpha and the intraclass correlation coefficient (ICC), respectively. The construct validity was assessed by measuring the association between the scores of the P-CDS and Caregiver Burden Scale (CBS), World Health Organization Quality of Life (WHOQOL-BREF), the Beck Depression Index (BDI II), and the Fatigue Severity Scale (FSS). The fit indices showed that the original model of CDS was relatively adequate (χ2/df = 2.03, CFI = 0.90, TLI = 0.88 and RMSEA = 0.08). All domains of P-CDS met the minimum reliability standards (Cronbach'salpha and ICC > 0.7). All subscales of P-CDS were positively correlated with the CBS, BDI-II and FSS and negatively correlated with the WHOQOL-BREF. The results showed that P-CDS is a valid and reliable measure for assessing the burden of care in Iranian mothers of CP children.

Factors associated with caregiver burden among caregivers of children with cerebral palsy in Sri Lanka.

A cross-sectional study was conducted among 375 caregivers of children with cerebral palsy attending a tertiary care setting in Sri Lanka, to identify factors associated with caregiver burden. Caregiver burden was defined as "caregiver's response to various stressors associated with caregiving" and was measured using Caregiver Difficulties Scale (CDS), developed specifically for this purpose. Multivariate linear regression was used to assess associations between sociodemographic, stressor, and coping factors and caregiver burden; and to examine whether coping reduces the effect of stressors on burden. Low income, rural residence, male sex, and number of functional deficits of the disabled child correlated significantly with higher caregiver burden, while spousal support correlated with lower burden. Seeking social support reduced the increased burden associated with greater functional impairments. Psychosocial interventions focused on evaluating and improving social support for caregivers may help families at high risk for caregiver distress, to minimize negative outcomes.