الفهرس 
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Abstract
Cerebral palsy is the most common cause of motor and neurological impairment among children. Providing care for children with CP is considerable due to the chronicity of the disease and the demands of the lifelong care. Thus, Mothers who have children with CP experience numerous difficulties and additional challenges that affect their physical and psychological health, social relationships, and financial situation leading to negative impact on their QOL and the entire family dynamics. Pediatric nurses have a crucial role regarding providing mothers with the appropriate information about CP diagnosis, treatment modalities and the available support systems. They also support mothers in the long process of rehabilitation to enhance their wellbeing.
This study was carried out to investigate the relationship between mothers’ quality of life and the care provided for their children with CP. The study was conducted in the Outpatient Psychiatric and Neurological Clinic at the Specialized University Hospital for children at Smouha, and the Rehabilitation and Physiotherapy Department at EL-Raml Hospital for Children (Wingat) in Alexandria. A convenient sample of 100 mothers who have children with CP comprised the study subjects. Three tools were used to collect the necessary data. The first tool was Mothers’ Care for their Children with Cerebral Palsy Structured Interview Schedule which was developed by the researcher. The second tool was Gross Motor Function Classification System which was adopted from Palisano et al. (2008). The third tool was Pediatric Quality of Life Inventory: Family Impact Module which was adopted from Varni et al. (2004). It involved eight subscales, 6 of them measures parents functioning and 2 subscales measures family functioning.
Tools were tested for their content validity by five experts in the Pediatric Nursing field. Every mother was interviewed individually. The data were collected for 12 months starting from the beginning of September 2020 to the end of August 2021.
The main results of the current study revealed the following:
▪ Nearly two-thirds of mothers were in the age group from 30 to less than 40 years (60.0%) with mean age of 33.69 ± 7.083 years.
▪ The majority of mothers were housewives (93.0 %).
▪ Nearly two-thirds of mothers had three or four children (61%).
▪ Nearly two-thirds of children with CP were at the age of 5 to 6 years (63.0%) with mean age 4.96±1.14 years.
▪ More than half of families were living in urban areas (59%) and 53% were extended families.
▪ One-third of children had spastic hemiplegia and quadriplegia (33% for each).
▪ Nearly one-third of children were in level V of GMFCS with limitations in all motor functions (33%).
▪ Regarding the overall care provided for children, more than two-thirds of mothers provided good level of care (68%), while nearly one-third provided satisfactory level (32%) and none of mothers provided poor level of care at all.
▪ The majority of mothers provided good level of care regarding hygiene of their children (88%) and about two-thirds of mothers exhibited good level of care related to exercises, management of cognitive and learning difficulties, feeding and nutrition besides maintaining social skills (70%, 69%, 68% and 61% respectively).
▪ Nearly one-third of mothers had satisfactory level of care regarding maintaining safety and social skills as well as feeding and nutrition (41%, 36% and 31% respectively).
▪ With regard to children’s feeding and nutrition, all mothers provided their children with high calories, low volume diet, fiber rich food and protein in addition to increased fluid intake (100% for each).
▪ Nearly two-thirds of mothers were putting their children in a sturdy seat with maintaining hips, knees and ankles at 90 °, besides keeping their children’s feet rested on hard surface (61% and 62% respectively).
▪ Nearly three-quarters of mothers were always providing their children suffering from dysphagia with appropriate consistency of food, filling the spoon halfway and placing the food in the middle of their tongues (71% for each).
▪ Regarding hygiene, all mothers stated that they wash their children’s hands when needed, trim their nails weekly and check their hair periodically for lices (100% for each).
▪ Almost all mothers were applying proper size of diapers for their children with urinary or bowel incomitance and changing diapers whenever needed (98.4% for each).
▪ Concerning exercises, the majority of mothers were providing daily passive stretching exercises for their children, changing their position frequently and applying muscle massage daily (97%, 97% and 95% respectively).
▪ Ninety-one percentage of mothers were committed to the follow-up of their children’s condition with physiotherapist (91%).
▪ Concerning safety of children, all mothers were checking their children at regular intervals while sleeping and dressing them in cotton undershirt (100%).
▪ Ninety-nine percentage of mothers were always committed to putting bed side rails or pillows beside their children.
▪ The majority of mothers were checking straps and rubber bands of orthosis before each application besides ensuring smooth movement of their children’s joints while applying orthosis (95.2% for each) and 75% of them were doing it always.
▪ Majority of mothers were supporting their children while walking and putting pillow between legs to prevent scissoring (90.5 % for each) and 94.7 % of them mentioned that they do it always.
▪ All mothers were putting their children on the ground in a safe place during seizures attack (100%). Almost all mothers also reported that they were loosening their children’s tight-fitting cloths and avoided giving their children food or liquids or putting a padded object in their mouth during seizures (98.5% for each).
▪ For maintaining social skills, all mothers were talking to their children while feeding or bathing them (100%). Majority of mothers were asking visitors to relate directly to their children and encouraging siblings to incorporate the children in activities (99% and 98% respectively).
▪ Regarding cognitive and learning difficulties, all mothers were speaking clearly and slowly with their children (100%) which was always done by 90 % of mothers.
▪ For children having hearing and speech difficulties, more than three-quarters of mothers were following up their children’s condition with speech and language pathologist (76.4%).
▪ For children in level I, II, and III of GMFCS, the majority of mothers were helping them in learning dressing skill and providing extra time to complete written work (82.5% for each).
▪ Regarding mothers’ overall QOL, 57% of mothers had low QOL level, while 30% of mothers experienced moderate QOL level and only 13% had high QOL level.
▪ The overall parent functioning of QOL was low among 66% of mothers. The majority of mothers had low QOL related to worry (80%) and more than two-thirds had low physical and emotional functioning of QOL (71% and 67% respectively). However, about half of mothers had high QOL related to communication in addition to social and cognitive functioning (51%, 50% and 46% respectively).
▪ Concerning mothers’ QOL related to physical functioning, feeling physically weak and tired during the day as well as getting headaches were almost always problems for nearly half of mothers (49% for each).
▪ Regarding emotional functioning of QOL, one-third of mothers were almost always feeling anxious, sad and angry (30%, 30% and 32% respectively). Moreover, more than one-quarter of them almost always felt frustrated, helplessness and hopelessness (27% and 28% respectively).
▪ For social functioning of QOL, 71 % of mothers reported that they never felt trouble getting support from others and 53% mentioned that feeling isolated from others was never a problem.
▪ In relation to cognitive functioning of QOL, 38% of mothers reported that they never had trouble for remembering what they were just thinking and 36% never had problems in hardness to think quickly or remembering what they just heard.
▪ Regarding communication, most of mothers never reported hardness to tell the doctors and nurses how they feel as a problem (96%). More than half of them also mentioned that they never had a problem in talking about their children’s illness with others (52%).
▪ Mothers’ worry about their children’s future and whether or not their medical treatments are working were almost always problems among 58% and 52% of mothers respectively.
▪ For family functioning of QOL, 57% of mothers had low QOL in daily activities. However, 56% experienced high QOL level in family relationships. The overall family functioning was low among 37% of mothers.
▪ Regarding daily activities, feeling too tired and difficulty finding time to finish the household tasks as well as taking more time and effort in family activities were reported as never a problem by 28%, 26% and 25% of mothers respectively.
▪ For family relationships, 48% and 45% of mothers mentioned that lack of communication and presence of conflicts between family members respectively were never problems.
▪ All mothers whose ages were 50 years or more provided good care for their children (100%) and 73.3% of mothers whose age ranged from 30 to less than 40 years provided also good care.
▪ Care provided by the majority of employed mothers was good (85.7%) compared to 66.7% of housewives.
▪ More than three-quarters of mothers who didn’t have consanguinity with their husbands provided good care for their children (76.9%) compared to 51.4% of those with positive consanguinity and the difference was statistically significant.
▪ Majority of mothers having 5 or 6 children provided satisfied care (83.3%), while 72.7% of mothers who were having 1 or 2 children provided good care and the difference was statistically significant.
▪ The majority of mothers who were living in urban areas provided good care for their children (83.1%).
▪ About three-quarters of mothers with no family history of CP provided good care (73.4%) compared to 47.6% of mothers with family history and the difference was statistically significant.
▪ Three-quarters of mothers having children aged from 4 to less than 5 years and from 5 to 6 years provided good care (75% and 71.4% respectively).
▪ Concerning GMFCS, 100% and 78.8% of mothers whose children were classified as Level IV and V respectively provided good care.
▪ The majority of mothers having first-born children with CP provided good care (90%) compared to 37.5% of those who have fourth-born children, and the difference was statistically significant.
▪ All mothers whose ages were 50 years or more and nearly two-thirds of those whose ages were from 30 to less than 40 years experienced low QOL (100% and 63.4% respectively).
▪ Around two-thirds of mothers who finished secondary education had low QOL level (61.5%).
▪ Two-thirds of mothers who had 5 or 6 children had low QOL (66.7%) and high QOL level was found among only 33.3% of them.
▪ Slightly less than two-thirds of mothers who were living in rural areas had low QOL (63.4%).
▪ The QOL was low among more than two-thirds of mothers who live in families with insufficient income (67.8%).
▪ More than two-thirds of mothers who had children aged from 5 to 6 years had low QOL (68.3%), while 56.3 % of those who had children aged from 4 to less than 5 years experienced moderate level of QOL.
▪ More than two-thirds of mothers of first and third-born CP children experienced low level of QOL (68.7% and 62.8% respectively).
▪ More than two-thirds of mothers whose children were classified as level V had low QOL (69.7%) while a very small percentage of them experienced high level (3.0%).
▪ There was very weak positive correlation between mothers’ QOL, and care provided for their children with CP. The care provided by mothers for their children is not affected by their QOL.