scholarly journals Burden and quality of life of informal caregivers of children with cerebral palsy

Rev Rene ◽  
2021 ◽  
Vol 22 ◽  
pp. e61752
Author(s):  
Abigail Oluwadunni Davis ◽  
Oladapo Michael Olagbegi ◽  
Kayode Orekoya ◽  
Mathew Adekunle ◽  
Olufemi Oyeleye Oyewole ◽  
...  

Objective: to analyze the caregiver burden and the quality of life of informal caregivers of children with cerebral palsy. Methods: the cross-sectional survey involved 109 caregivers of children with cerebral palsy recruited from physiotherapy clinic at a tertiary hospital. The quality of life and caregiver burden were assessed using the Personal Wellbeing Index Scale and the Modified Caregivers’ Strain Index, respectively. Data were analysed using descriptive and inferential statistics. Results: the mean strain index and quality of life scores of the participants were 11.85 ± 5.72 and 64.68 ± 8.03 respectively. The majority (67.9%) of the caregivers had fair personal well-being, while about one-third (33.0%) had high caregiver’s strain. Child’s age (B=2.454; p<0.005) and caregivers’ occupation (B= -2.547; p=0.001) were predictors of caregiver strain. Conclusion: caring for children with cerebral palsy imposed a substantial burden on the caregivers and child’s age and caregivers’ occupation were predictor variables.

2021 ◽  
Author(s):  
Alanoud Akram Aman ◽  
Bashaer Baharoon ◽  
Haifa Jamal Idrees ◽  
Ahad Mohammedyusuf Taj ◽  
Bassmah Ali Alzahrani ◽  
...  

2015 ◽  
Vol 14 (1) ◽  
pp. 102-109 ◽  
Author(s):  
George Vles ◽  
Ruben Hendriksen ◽  
Jose Hendriksen ◽  
Elisabeth van Raak ◽  
Dan Soudant ◽  
...  

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 92-93
Author(s):  
Ghimire Ghimire ◽  
Devendra Singh ◽  
Sara McLaughlin ◽  
Dhirendra Nath ◽  
Hannah McCarren ◽  
...  

Abstract Traditionally, adult children have served as primary caretakers and providers for older Nepalese adults. However, out-migration of adult children for employment and other opportunities is increasing. Health-related quality of life (HRQOL) in older Nepalese adults in general and in the context of adult children’s migration is poorly understood. This study aims to assess HRQOL of older Nepali adults and its relationship with adult children’s migration. We used existing cross-sectional survey data on 260 older adults from the Krishnapur municipality, which has witnessed a high rate of adult migration. HRQOL was assessed using the SF-12, which provides a physical (PCS) and mental (MCS) health component. Scores for PCS and MCS range from 0-100; a higher score indicates better HRQOL. Simple and multiple linear regression were used to assess correlates of HRQOL. Participants had suboptimal HRQOL [mean (±SD): PCS =40.4±9.2 and MCS=45.2±7.7]. After adjusting for covariates, adult children’s migration was associated with lower MCS scores (β: -2.33, 95%CI: -4.21, -0.44). Individuals with more than one child had higher MCS scores (β: 2.14, 95%CI: 0.19, 4.09). Females (β: -3.64, 95%CI: -7.21, -0.06) and those with a history of unemployment (β: -6.36, 95%CI: -10.57, -2.15) had lower PCS scores than their respective counterparts. The presence of one or more chronic conditions was associated with significantly lower PCS and MCS. Our findings suggest that out-migration of adult children may negatively effect HRQOL among older Nepali adults, specifically their psychological well-being. Additional research is needed to investigate potential moderating factors that may serve as important buffers.


10.2196/21466 ◽  
2021 ◽  
Vol 23 (4) ◽  
pp. e21466
Author(s):  
Ieva Biliunaite ◽  
Evaldas Kazlauskas ◽  
Robbert Sanderman ◽  
Inga Truskauskaite-Kuneviciene ◽  
Austeja Dumarkaite ◽  
...  

Background Caregiving for a family member can result in reduced well-being for the caregiver. Internet-delivered cognitive behavioral therapy (ICBT) may be one way to support this population. This is especially the case for caregivers in countries with limited resources, but high demand for psychological services. Objective In this study we evaluated the effects of a therapist-guided 8-week-long ICBT intervention for informal caregivers. Methods In total, 63 participants were recruited online and randomized either to the intervention or to the wait-list control group. The main study outcome was the Caregiver Burden Inventory (CBI). Secondary outcomes included measures of caregiver depression, anxiety, stress, and quality of life. Results Moderate between-group effect sizes were observed for the CBI measure, in favor of the intervention group, with a Cohen d=–0.70 for the intention-to-treat analysis. Analyses of the subscales of the CBI showed significant reductions on the subscales of Development and Physical Health. Moderate reductions were found for depression and anxiety scores as indicated by the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scores. Large between-group effects were observed for reduction in stress and increase in quality of life as indicated by the Perceived Stress Scale-14 (PSS-14), The Brunnsviken Brief Quality of Life Scale (BBQ), and The World Health Organization-Five Well-Being Index (WHO-5). In addition, participants experienced little to no difficulty in using the program and were mostly satisfied with the intervention’s platform and the choice of content. Conclusions This is the first internet intervention study for informal caregivers in Lithuania. The results suggest that therapist-guided ICBT can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life. Trial Registration ClinicalTrials.gov NCT04052724; https://clinicaltrials.gov/ct2/show/NCT04052724


2019 ◽  
Vol 18 ◽  
pp. e019002
Author(s):  
Katarína Molnárová Letovancová ◽  
Miriam Slaná ◽  
Michaela Hromková

The birth of a child with cerebral palsy is an enormous challenge for the parents which has a direct impact on their quality of life. Therefore, we believe it is important to pay attention to this topic. To that end, we conducted research on the quality of life of parents of children with cerebral palsy in 2018. To achieve our goal, we applied quantitative research strategy and used a valid research tool, i.e. a standardized quality of life questionnaire – Family Quality of Life Scale ("FQOL"). The average score reached by respondents was 94.0918 points which indicates a higher quality of life in respondents than expected. The evaluation of the average score for each dimension of the scale showed that respondents scored the lowest in the "Emotional Well-Being" dimension (13.2551 points) and "Social Support" (15.6429 points). The research further confirmed that there were statistically significant differences in the quality of life of respondents depending on their age (t = -2.341, p = 0.021), marital status (F = 3.476, p = 0.019) and the territorial region (χ2 = 15.39, p = 0.031). A statistically significant relationship between the quality of life of respondents and the age of the child with cerebral palsy (0.288 **, p = 0.004) was confirmed. Despite a relatively high score that indicated a higher quality of life in respondents, the research identified two areas in which parents of children with cerebral palsy had a lower quality of life, namely, their emotional well-being and social support.


2021 ◽  
pp. 030802262199511
Author(s):  
Ayla Günal ◽  
Serkan Pekçetin ◽  
Petra Wagman ◽  
Carita Håkansson ◽  
Hülya Kayıhan

Introduction Occupational balance (OB) is an important concept in occupational therapy and is considered as an essential component of health and well-being. The aim of this study was to show differences in OB and quality of life (QoL) between mothers of children with cerebral palsy (CP) and typically developing children. Methods Thirty-six mothers of children with CP and 36 mothers of typically developing children participated in the study. The mothers’ OB was evaluated using the Turkish Occupational Balance Questionnaire-11 (OBQ11-T), and their QoL was evaluated with the Nottingham Health Profile (NHP). Results The OBQ11-T, total score, and the item ‘balance between obligatory and voluntary occupations’ score differed significantly between the groups ( p < 0.05). There were also significant differences in NHP’s aspects of emotional reaction, social isolation, and sleep scores between the groups ( p < 0.05). A negative correlation was detected between OBQ11-T total and NHP total scores in mothers of children with CP ( p < 0.01). Conclusion This study demonstrates that occupational therapists should pay attention to balance between obligatory and voluntary occupations to promote occupational balance. Also, QoL in mothers of children with CP should be evaluated. Therefore, occupational therapists should implement interventions to increase them when necessary for mothers of children with CP.


2018 ◽  
Vol 37 (2) ◽  
pp. 122-128
Author(s):  
Niti Shrestha ◽  
Sabitra Paudel ◽  
Ritesh Thapa

Introduction: Cerebral Palsy (CP) may affect individual’s everyday life and it may have significant impact on quality of life (QOL). The objective of this study was to assess the quality of life of children with Cerebral Palsy in Nepal.Material and Methods: This is a descriptive cross sectional study that involved 42 children between 4 and 12 years of age. The Socio-demographic variables were obtained from interviews and CP related factors were obtained from medical reports. Validated CP-QOL child self-report and parent proxy version of questionnaire was used for data collection. Severity was assessed using Gross Motor Function Classification System (GMFCS), Manual Ability Classification System (MACS), Communication function Classification System (CFCS) and ICD-10 Classification System. Data were summarized using descriptive statistics. Kruskal Wallis and Man Whitney was used to find out association between Cerebral Palsy related factors and Quality of Life.Results: 57.1% (n=24) were between 8 and12 years of age and 42.9% (n=18) were between 4 and 8 years of age. Overall QOL was reported to be fairly good. Both the child and Caregiver gave highest score on “Social wellbeing and acceptance” and “Emotional wellbeing and self-esteem domain” and Lowest Point in “Pain and Impact of disability”. This implies that Psychosocial Quality of Life is good in children with CP. Quality of Life as reported by child was better than Quality of Life reported by Caregiver.Conclusion: Overall QOL is fairly good in children with CP. However, Pain and impact of disability impairs QOL.


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