Time burden of caring and depression among parents of individuals with cerebral palsy

Park, Eun‐Young; Nam, Su‐Jung

doi:10.1080/09638288.2018.1432705

Cited by 44 publications

(38 citation statements)

References 20 publications

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“…In a study by Park and Nam, the parents spent about 14–15 h a day looking after a child with CP, without seeking support from other family members. The findings showed no effect of the time dedicated to care in the prevalence of depression, however increasing duration was associated with a greater risk of exceeding the threshold of depression [46]. The above results were confirmed by Sawyer et al who reported that time pressure significantly influenced the occurrence of depression among parents of children with CP [25]; likewise, Roxburgh established that time pressure predicted the occurrence of depression [47].…”

Section: Discussionmentioning

confidence: 80%

Assessment of Anxiety and Depression in Polish Primary Parental Caregivers of Children with Cerebral Palsy Compared to a Control Group, as well as Identification of Selected Predictors

Gugała

Penar-Zadarko

Pięciak-Kotlarz

et al. 2019

IJERPH

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Background: Taking care of a child with Cerebral Palsy (CP) may be linked with adverse effects in the parents’ physical and mental health. The causes of anxiety and depression symptoms associated with childcare are still not fully understood. Aim: To assess the intensity of anxiety and depression symptoms in parents of children with CP compared to a control group and to identify selected mental health predictors. Design and Methods: Data were collected from 301 respondents, including 190 parents of children with CP (study group) and 111 parents taking care of children developing normally (control group). Intensity of anxiety and depression was rated using the Hospital Anxiety and Depression Scale (HADS) scale. Gross Motor Function Classification System for Cerebral Palsy (GMFCS), Sense of Coherence Scale (SOC-29), Berlin Support Social Scales (BSSS) scales and a specially designed questionnaire were used to assess the predictors. The investigated variables included the children’s and the parents’ characteristics, as well as environmental factors. The analyses applied Spearman’s rank correlation coefficient, M(SD) as well as multiple regression. Results: The level of anxiety and depression was clearly higher in the parents of children with CP–the mean levels of anxiety and depression in the study group and the controls amounted to 8.1 vs. 4.7 and 6.8 vs. 3.7, respectively. The factors associated with intensity of anxiety and depression in the parents of children with CP included lack of social support, mainly perceived and received support, unsatisfying parental health status, poor economic status of the family, as well as difficult living conditions, sense of coherence, loneliness, the parent’s gender, and the child’s intellectual disability. Conclusions: Identification of significant anxiety and depression predictors, understood as modifiable factors, should be considered in determining and planning comprehensive support for a child with CP and his/her primary parental caregiver.

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Section: Discussionmentioning

confidence: 80%

Assessment of Anxiety and Depression in Polish Primary Parental Caregivers of Children with Cerebral Palsy Compared to a Control Group, as well as Identification of Selected Predictors

Gugała

Penar-Zadarko

Pięciak-Kotlarz

et al. 2019

IJERPH

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“…Usual family life was disrupted by the need for intensive parent intervention in activities that are usually performed by a multidisciplinary team (rehabilitation professionals, teachers, etc.). The parents of children with disabilities already have to cope with the physical and mental health challenges associated with having a child with disabilities in normal times and are therefore particularly vulnerable during the pandemic [24] , [25] . The closure of schools and some specialized services and establishments in France during the lockdown increased the pressure on these parents, generating a high risk of parental exhaustion [25] , [26] .…”

Section: Discussionmentioning

confidence: 99%

Emerging health challenges for children with physical disabilities and their parents during the COVID-19 pandemic: The ECHO French survey

Cacioppo

Bouvier

Bailly

et al. 2021

Annals of Physical and Rehabilitation Medicine

151

130

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Background The daily lives of children with physical disabilities and their families have been significantly affected by the COVID-19 pandemic. The children face health risks, especially mental, behavioral, social and physical risks. Objective This study aimed to identify potential healthcare issues relating to the wellbeing of disabled children, continuity of rehabilitation and medical care, and parental concerns during the COVID-19 lockdown. Methods The Enfant Confinement Handicap besOins (ECHO [child lockdown disability needs]) national survey was developed by a multidisciplinary group and disseminated in France from April 6, 2020 via email and social networks. This online survey was addressed to the parents of children with physical disabilities aged 0 to 18 years. It explored the experiences of children and their families during the lockdown. Information regarding children's wellbeing, rehabilitation and family organization was collected. The first 1000 eligible surveys were analyzed. Results The children (mean [SD] age 9.5 [4.8] years) mostly had cerebral palsy (42%) or neuromuscular diseases (11%). The lockdown had negative effects on morale (44% of children), behaviour (55% of children) and social interactions (55% no contact with other children). Overall, 44% of children stopped physical activities; 76% were educated at home; 22% maintained medical follow-up, and 48% and 27% continued physiotherapy and occupational therapy respectively. For more than 60% of children, parents performed the therapy. The main parental concern was rehabilitation (72%) and their main difficulty was the mental load (50%); parents complained of lack of help and support (60%). Conclusions This study highlighted substantial effects on the health of children with physical disabilities and loss of opportunity, with a massive interruption of medical follow-up and rehabilitation, during the lockdown. Regular assessment of the health benefit/risk is essential to support families and ensure continuity of care during a pandemic.

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“…Although many caregivers cope with this new condition in the presence of CP, the lack of complete recovery of disorders leads to physical and psychological impact on caregivers. 18,19 Therefore, many scales have been developed where general physical and psychological health of children and their families are discussed, but in some of these scales 20 , family relationships at different levels, meal times and financial issues are not addressed or some of them included studies that were more specific (unemployed, single parents, etc. ), or have limited evaluations to reduce the number of questions.…”

Section: Discussionmentioning

confidence: 99%

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

Umay¹,

Gündoğdu²,

Öztürk³

2019

Turk J Pediatr

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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.

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Time burden of caring and depression among parents of individuals with cerebral palsy

Cited by 44 publications

References 20 publications

Assessment of Anxiety and Depression in Polish Primary Parental Caregivers of Children with Cerebral Palsy Compared to a Control Group, as well as Identification of Selected Predictors

Assessment of Anxiety and Depression in Polish Primary Parental Caregivers of Children with Cerebral Palsy Compared to a Control Group, as well as Identification of Selected Predictors

Emerging health challenges for children with physical disabilities and their parents during the COVID-19 pandemic: The ECHO French survey

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

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