Table 2.
Article | Country | Scale or Questionnaire Used | Main Findings |
---|---|---|---|
Understanding the lives of caregivers of children with cerebral palsy in rural Bangladesh: Use of mixed methods | Bangladesh | PedsQL Family Impact Questionnaire | Lower quality of life in all domains of PedsQL in families of children with CP (p < 0.001). Parents experienced fatigue, stigma, lack of social support. |
Assessment of family environment and needs of families who have children with cerebral palsy | Turkey | Family Needs Score (FNS) and Family Environment Score (FES) | Vast majority (91.8%) of primary caregivers were mothers. More families cited information needs (84.3%) than support or financial needs. Many families had assistance from elders. |
An investigation of parents’ problems according to motor functional level of children with cerebral palsy | Turkey | Author written questionnaire | Families with children with more severe CP had more problems than those with mild CP (no p-value given). Major difficulties were economic, lack of health services, and communication. Many families had assistance from elders. |
Comparative quality of life of Nigerian caregivers of children with cerebral palsy | Nigeria | World Health Organisation Quality of Life score (WHOQoL-BREF), Gross Motor Functional Classification System (GMFCS) | Caregivers of children with CP have a lower quality of life than those without children with CP (p = 0.003). Quality of life scores improved over time as children’s motor function improved, suggesting that early intervention and therapy may help with caregiver’s quality of life long term. No significant correlation between child’s GMFCS and severity of depression (p = 0.339). |
Depression in mothers of children with cerebral palsy and its relation to severity and type of cerebral palsy | Iran | Beck Depression Inventory-II (BDI-II), GMFCS | Greater risk of mothers caring for children with CP having depression (p = 0.003). No significant correlation between the GMFCS and severity of depression. |
Depression and anxiety levels in mothers of children with cerebral palsy: A controlled study | Turkey | Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI) | Higher levels of depression and anxiety in mothers of children with CP (p = <0.001). Statistically significant difference in effect of speech defects and higher GMFCS score on mothers’ depression (p < 0.05 with 95% CI) based on logistic regression. |
Depression in parents of children with cerebral palsy in Bosnia and Herzegovina | Bosnia and Herzegovina | Zung self-evaluated method for depression | No significant difference in levels of depression between mothers and fathers of children with CP, and mothers of healthy controls (p = 0.09). |
Factors associated with caregiver burden among caregivers of children with cerebral palsy in Sri Lanka | Sri Lanka | WHOQoL-BREF ‘Caregiver Difficulties Scale’ (CDS) | Majority of caregivers (97%) were mothers. Majority of caregivers were from a rural area and low socioeconomic background (72% and 70% respectively). Living in a rural area (p = 0.001), having a lower income (p < 0.023), male sex of the child (p = 0.017), and more significant functional impairment of child (p < 0.001) were associated with a higher caregiver burden in multivariate analysis. Social support was associated with a lower caregiver burden (p < 0.001). |
Functional priorities reported by parents of children with cerebral palsy | Brazil | Questionnaire | In all age groups, ‘personal care’ was the highest rated functional goal by parents (42.99%–52.38%). In 3–6 year olds, play was second highest rated (20.56%), in 7–10 year olds and in 11–16 year olds, school was the second highest rated (23.16% and 22.22% respectively). |
Higher Levels of Caregiver Strain Perceived by Indian Mothers of Children and Young Adults with Cerebral Palsy Who have Limited Self-Mobility | India | Caregiver Strain Index (CS) | Caregivers of children with higher scores on GMFCS had higher levels of caregiver strain (p < 0.01). |
Life quality among mothers of children with cerebral palsy living in Armenia | Armenia | BDI-II and Norakidze’s modification of Taylor manifest anxiety scale | High levels of depression (74%) and anxiety (95%) in mothers of children with CP. Mothers with lower level of education had higher rates of anxiety. |
Mental health and quality of life of caregivers of individuals with cerebral palsy in a community-based rehabilitation programme in rural Karnataka | India | General Health Questionnaire (GHQ) WHOQoL-BREF | Majority (87%) of caregivers were mothers. No statistically significant difference in GHQ-28 score in relation to functional status of child. No statistically significant difference in children’s needs in relation to mothers’ mental health score. |
Coping with stress and adaptation in mothers of children with cerebral palsy | Serbia | Family Crisis Oriented Personal Evaluation Scale (F-COPES) | No difference in methods of coping between urban and rural mothers, reframing was the strategy most commonly used. Only statistically significant difference in methods of coping in relation to severity of child’s functional impairment was use of institutions in more severe impairment. |
Fatigue in the mothers of children with cerebral palsy | Turkey | Fatigue Symptom Inventory (FSI), Beck Depression Scale (BDS), and Nottingham Health Profile (NHP) | Mothers of children with CP scored higher in all groups of FSI (p < 0.00001). Mothers of children with CP had higher scores on BDS (p < 0.00001). Mothers of children with CP had higher scores on BDS (p < 0.026 or less in all domains). No impact of GMFCS on outcomes in mother when regression analysis applied. Fatigue correlated with higher NHP and BDS scores. |
Predictors of stress in mothers of children with cerebral palsy in Bangladesh | Bangladesh | Judson Scale, Family Support Index (FSI) | Higher levels of stress in mothers living in rural areas (p = 0.02). Higher levels of household income associated with lower levels of stress (p = 0.02). Level of child’s functional impairment not associate with higher levels of stress. Child’s behavioural issues (including sleep, bet wetting, hyperactivity) associated with a higher level of stress (goodness of fit 75.46%). |
Psychological distress and perceived support among Jordanian parents living with a child with cerebral palsy: A cross sectional study | Jordan | GMFCS, Perceived Stress Scale (PSS), BDI, Strengths and Difficulties Questionnaire (SDQ), and Multidimensional Scale of Perceived Social Support (MSPSS) | Many parents of children with CP have perceived levels of stress. Parents of children with higher GMFCS had higher levels of stress (p = 0.03). Parents of children with more behavioural issues had higher levels of perceived stress. Parents with lower social supports had higher levels of stress (p < 0.0005). |
Psychological adversities and depression in mothers of children with cerebral palsy in Nigeria | Nigeria | Psychosocial Adversity Scale (PAS) and Patient Health Questionnaire (PHQ) | Additional psychosocial stressors associated with depression (all except unemployment and mother’s education). Majority of mothers (89%) had some degree of depression. |
Quality of life in mothers of children with cerebral palsy: The role of children’s gross motor function | Iran | Short Form Health Survey (SF-36), GMFCS | Mothers of children with better GMFCS had better QoL scores. When compared with general population mean, mothers of children with CP has statistically significant lower scores in all QoL domains. |
Quality of life in parents/caretakers of children with cerebral palsy in Kampong Cham, Cambodia | Cambodia | Comprehensive Quality of Life Scale (ComQOL-A5) scores | Lowest scoring QoL domains were health, emotional wellbeing, and material well-being. |
Social support provided to caregivers of children with cerebral palsy | Brazil | Sarason’s Social Support Questionnaire (SSQ) | Majority of caregivers (88%) are mothers. Husband, mother, and brother are those cited most frequently as sources of social support. |
The effect of having a children with cerebral palsy on quality of life, burn-out, depression and anxiety scores: A comparative study | Turkey | WHOQoL-BREF, GMFCS |
Higher levels of depression in CP group compared to control group (58.0% vs. 46.7%). Higher levels of anxiety in CP group compared to control group (71.4% vs. 51.7%). Highest scores in WHOQoL were in domains of physical, psychosocial, and environment. Correlation between higher GMFCS and higher total WHOQoL and BDI scores (p = 0.04 and 0.01 respectively). |
Quality of life and anticipatory grieving among parents living with a child with cerebral palsy | Jordan | Marwitand Meuser Caregiver Inventory Quality of Life Index |
62.7% reported stress, 78.3% reported drastic life changes, 71.0% reported anxiety, 73.4% reported excellent family support. Personal sacrifice burden score highest. Negative correlation between anticipatory grief and QoL scores (p < 0.0005). |
Psychosocial impact of caring for children with cerebral palsy on the family in a developing country | Nigeria | Impact on Family Scale (IFS) and GMFCS | Majority of caregivers (80.3%) were mothers. Although 46.2% of CP children had speech impairments, only 2.6% received speech therapy. Correlation between higher GMFCS and higher IOF scores, but not statistically significant (p = 0.16). Higher IOF scores in families of children with CP (p = 0.000). |
Psychosocial challenges for parents of children with cerebral palsy: A qualitative study | Iran | Semi-structured interview | Lack of financial support, transportation, medical services. Sense of guilt, stigma. Lack of social support. |
Investigation of quality of life in mothers of children with cerebral palsy in Iran: Association with socio-economic status, marital satisfaction and fatigue | Iran | WHOQoL-BREF, Socioeconomic Status Questionnaire (SES), Index of Marital Satisfaction (IMS) and Fatigue Severity Scale-Persian (FSS-P) | Mothers in CP group has lower SES categories. Mothers in CP group had higher fatigue levels (p < 0.001) and higher marital dissatisfaction (p < 0.001). Mothers in CP group had lower QoL scores in all domains (p < 0.001). |
Frequency and severity of depression in mothers of cerebral palsy children | Pakistan | Siddiqui -Shah Depression Scale (SSDS) | 50.62% of mothers had depression. |
Experiences shared through the interviews from fifteen mothers of children with cerebral palsy, sexuality and disability | Turkey | Semi-structured questionnaire | Majority of caregivers were mothers, often blamed for child’s condition. Out of 12 who had other children, 3 reported difficulties in sibling relationships. All mothers reported financial difficulties. Lack of suitable support for child’s education. Concerns for child’s future. |
An evaluation of quality of life of mothers of children with cerebral palsy | Turkey | Turkish version of SF-36 | Negative correlation between SF-36 QoL scores and GMFCS; significant in domains of role physical (p = 0.001), bodily pain (p = 0.023), general health (p = 0.031), social functioning (p = 0.0320, role emotional (p = 0.003), and mental health (p = 0.004). Statistically significant difference between mothers of children with CP and controls in domains of mental health (p = 0.002), social functioning (p = 0.002), general health (p = 0.001), bodily pain (p = 0.005), and role physical (p = 0.008). |
Assessment of the quality of life of mothers of children with cerebral palsy (primary caregivers) | Turkey | Nottingham Health Profile-1, BDI, BAI, GMFCS | Higher NHP score in mothers of children with CP in sleep, energy, social isolation (p = 0.000), pain (p = 0.007), physical activity (p = 0.004), and emotional reactions (p = 0.001). BDI scores higher in mothers of children with CP (p = 0.000). 78.2% of mothers of children with CP had depression compared with 21.7% in control group. |
Coping strategies and resolution in mothers of children with cerebral palsy | Serbia | Reaction to Diagnosis Interview (RDI) and classification system used and modified version of F-COPES and Functional Status II (FS-II) | 59% mothers remained unresolved. Reframing was the coping strategy used most, followed by passive appraisal. No difference between resolution and non-resolution depending on coping strategy. Mothers with children with better functional status who utilised institutional support had better resolution. |
Depression in mothers of children with cerebral palsy and other related factors in Turkey: A controlled study | Turkey | BDI, GMFCS | More mothers in the CP group (61.2%) were depressed compared with control group (36%). Depression did not vary depending on CP type. Depression correlated with speech deficits (p = 0.036). No correlation between GMFCS level I, II, III and groups IV, V, and depression (p = 0.260). Higher BDI score correlated with lower household income (r = −0.384, p = 0.007). |