European Journal of Clinical Pharmacy

Print ISSN: 2385-409X Online ISSN: Applied Website: https://farmclin.es/

 

Article

A Qualitative Study to Explore the Challenges Faced by the Mothers of Children with Cerebral Palsy in a Selected Special School at Puducherry

Abstract: Background of the Study: Caring for a child with cerebral palsy (CP) is demanding and requires effort, dedication, time and resources. Mothers’ caring for children with CP faces various situations that may have an adverse effect on their social well-being. Demanding caring responsibilities may also lead to "an imbalance in their daily activities when compared to mothers with healthy children". This imbalance is likely to result in physical and emotional distress, subsequently affecting their social functioning. A qualitative study was undertaken to explore the challenges faced by the mothers of children with cerebral palsy in a selected special school at Puducherry.

Objective: To explore the challenges faced by the mothers of children with cerebral palsy and provide a booklet with information on how to care for these children and overcome the difficulties mothers confront.

 Materials and Methods: A qualitative approach using phenomenological design was utilized in this study. A total of 10 mothers of children with cerebral palsy were selected by using maximum variation sampling technique at a selected special school of Puducherry. In-depth interview process was utilized for data collection through open ended questionnaires. Interviews were audio-recorded and verbatim were transcribed. Colaizzi’s phenomenological analysis method was chosen to interpret the phenomenon under this study.

Results: The phenomenological data analysis process transformed the set of 10 mothers of children with cerebral palsy transcripts into significant meaning statements and thematic clusters. Eight themes and 23 sub-themes were identified on the mothers of children with cerebral palsy such as general difficulty which included difficulty in raising the child and discomfort in public places with the child and the mothers had  overcome the challenges through seeking help from others, avoiding to go out and preparing the child’s needs. The second theme was physical health which included improper personal hygiene and hospitalization during illness and they had overcome the challenges through educating about hygiene and managing with medicine. The third theme was psychological health which included difficulty in managing positive and negative emotions and had overcome the challenges through spending more time with their child and accepting the situation. The fourth theme was dietary pattern which included difficulty in feeding the child and the mothers had overcome the challenges through preferring easily chewing foods and scheduling food time. The fifth theme was the elimination pattern which included being unable to communicate the elimination needs and they had to overcome the challenges through rewards and punishments. The sixth theme was spiritual pattern which included losing faith in God and the mothers had overcome the challenges through lots of prayers. The seventh theme was family support which included financial burden and they overcome the challenges through discussing problems with others and the eighth theme was future goals which included inability to perform basic needs and had overcome the challenges through performing daily activities.

Conclusion: The findings of the present study revealed that the mothers of children with cerebral palsy faced many challenges and had overcome them. The most prevalent challenges faced by the mothers of children with cerebral palsy were difficulty in raising the child and discomfort in public places with the child. Majority of the mothers used to overcome their challenges by accepting and adapting to the situation and seeking help from others. These findings also indicate the important role for the child health nurse to motivate the mothers by creating awareness through provision of information booklets regarding cerebral palsy children and ways to overcome the challenges.

 

Keywords: Challenges, cerebral palsy, information booklet

 

INTRODUCTION

Today’s children are tomorrow’s citizens. Caring for a child with cerebral palsy (CP) is demanding and requires effort, dedication, time and resources. Mothers’ caring for children with CP faces various situations that may have an adverse effect on their social well-being. Demanding caring responsibilities may also lead to "an imbalance in their daily activities when compared to mothers with healthy children". This imbalance is likely to result in physical and emotional distress, subsequently affecting their social functioning.(1)

 

Cerebral palsy is the most common physical disability in childhood. Children with cerebral palsy usually survive into adulthood and the condition is often poorly understood in adulthood. Recognizing and managing cerebral palsy's many important comorbidities is as important as treating the motor disabilities. Recent advances in the understanding of cerebral palsy include new ways of thinking about disability; recognition of causal pathways; and improvements in measurement, classification and prognostication. Challenges include ensuring the wellbeing of families as well as children; tackling the issues faced lifelong by people with cerebral palsy; and the continuing need for primary, secondary and tertiary prevention of the effects of cerebral palsy on people's lives.(2)

 

Cerebral palsy (CP) is one of the most frequent causes of motor disability in children. CP is a group of permanent disorders of the development of movement and posture, causing activity limitations that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The CP definition has evolved over time; the problem is etiologically and clinically heterogeneous. Data from the register of 6500 children with CP from 13 European centers, which were published in 2002 and concerned the years 1980–1990, allowed for estimating the average incidence of CP as 2.08 per 1000 live births; however, the incidence among premature babies with birth weight below 1500 grams was more than 70 times higher than in children with birth weight of 2500 grams and more.(3)

 

The risk factors for CP can be divided into pre-conception, prenatal, perinatal and postnatal ones. CP commonly coexists with epilepsy, in particular drug-resistant epilepsy, but also with mental retardation, visual and hearing impairment, as well as feeding and behavioral disorders. The degree of motor problem varies from mild to very severe making the child totally dependent on caregivers. (4) 

 

Cerebral palsy (CP) is a disorder characterized by abnormal tone, posture and movement and clinically classified based on the predominant motor syndrome—spastic hemiplegia, spastic diplegia, spastic quadriplegia, and extrapyramidal or dyskinetic. The incidence of CP is 2–3 per 1,000 live births. Prematurity and low birth weights are important risk factors for CP; however, multiple other factors have been associated with an increased risk for CP, including maternal infections, and multiple gestation. In most cases of CP the initial injury to the brain occurs during early fetal brain development; intracerebral hemorrhage and periventricular leukomalacia are the main pathologic findings found in preterm infants who develop CP.

 

The diagnosis of CP is primarily based on clinical findings. Early diagnosis is possible based on a combination of clinical history, use of standardized neuromotor assessment and findings on magnetic resonance imaging (MRI); however, in most clinical settings CP is more reliably recognized by 2 years of age. MRI scan is indicated to delineate the extent of brain lesions and to identify congenital brain malformations. Genetic tests and tests for inborn errors of metabolism are indicated based on clinical findings to identify specific disorders. Because CP is associated with multiple associated and secondary medical conditions, its management requires a multidisciplinary team approach. Most children with CP grow up to be productive adults.(4)

 

Furthermore, moms encounter socio-economic difficulties since many of them are unemployed and deal with marital issues. Therefore, a biopsychosocial model of disability could be used to view the difficulties. Thus, it is clear that raising children with cerebral palsy has a detrimental impact on these moms' quality of life.

 

To address the challenges experienced by mothers caring for children with disabilities, rehabilitation interventions should take place. As these challenges are multidimensional, an intersectoral approach based on a model such as the Community-based Guidelines Matrix should be considered.(5)

 

Cerebral palsy (CP), with a prevalence of 2.83 per 1000 children among the age group of 0 to 19 years, is one of the most common causes of disability in India.(6) A child with CP suffers from several problems such as spastic paralysis, cognitive impairment, chronic pain, speech and visual impairment, and gastrointestinal and feeding problems.(7) They also have several limitations in self-care functions such as feeding, dressing, bathing, and mobility. These limitations can result in requirements for long-term care that far exceed the usual needs of normal children.(8)

 

Because of the challenges that children with cerebral palsy encounter, their parents are under more stress, which negatively impacts their physical and social health.9,10,11  Due to shifts in societal perceptions and healthcare systems, the majority of children are now raised by family members at home rather than in an institution. Moreover, in western countries, a greater emphasis is laid on family-centered care, wherein the focus of attention is the entire family, rather than just the child, and this has been found to be highly effective.(12, 13, 14) The family together with service providers is able to make informed decisions about the services and support the child and family shall receive. In order to develop a family-centered care practice, it is imperative to understand and address the psychosocial problems experienced by the caregivers of the affected children.( 9,15,16)

 

Several studies of this kind have been undertaken in western countries but very few are reported in India. In a country like India there are significant differences between the environments of urban and rural areas. Our study seeks to explore the psychosocial problems experienced by the parents of children with CP. An improvement in understanding can allow us to further conduct studies in our region, to determine the extent of the problem, and develop systems to address issues that are uncovered.(17) Thus, which motivated the researcher to explore the challenges experienced by mothers of children with cerebral palsy in Puducherry.

OBJECTIVES

· To explore the challenges faced by the mother of children with cerebral palsy.

· To develop an information booklet on care of children with cerebral palsy and overcoming the challenges faced by the mothers.

ASSUMPTIONS

· Mothers may face the challenges in care of children with cerebral palsy.

· Verbalizing the challenges faced by the mothers may lessen their anxiety.

· Information booklet on care of the child with cerebral palsy and dealing with the challenges helps in providing better care to the child

MATERIALS AND METHODS

Qualitative research approach and phenomenological research design was adapted for this study. The study was done at Satya Special School, Karuvadikuppam, Pondicherry. After obtaining the formal permission from the concerned authority and Institutional research review committee ((IRC NO: ICON IRC-2021-2022-010). The data was collected over a period of four weeks from 17.07.2023 to 31.08.2023. The investigator was given self-introduction and explanation about the study protocol to the samples. After this, informed consent was obtained from all the samples. A total of 10 mothers of children with cerebral palsy were selected by using maximum variation sampling technique at a selected special school, Puducherry. In-depth interview process was utilized for data collection through open ended questionnaires. Interviews were audio-recorded and verbatim were transcribed. Colaizzi’s phenomenological analysis method was chosen to interpret the phenomenon under this study.

RESULTS

Table 1: Frequency and percentage distribution of Demographic variables among mothers of children with cerebral palsy

Demographic variables	Category	Mothers of children with cerebral palsy
		Frequency (n)	Percentage (%)
Age of the child	3 months-6 years	3	30
	7-12 years	3	30
	Above 12 years	4	40
Age of the mother	18-28 years	3	30
	29-39 years	4	40
	>40 years	3	30
Religion	Hindu	7	70
	Muslim	2	20
	Christian	1	10
Educational status of the mother	Primary school	6	60
	Secondary school	2	20
	Graduate	2	20
Employment status of the mother	Home-maker	8	80
	Private employee	2	20
	Government employee	-	-
Employment status of the father	Self-employment	5	50
	Government employee	4	40
	Private employee	1	10
Family income per month	< Rs.10,000	8	80
	Rs.10,001- 15,000	1	10
	>Rs.15,000	1	10
Type of marriage	Within family members	3	30
	Outside family member	7	70
	Others	-	-
Type of family	Nuclear family	4	40
	Joint family	5	50
	Extended family	1	10
Number of children	One	4	40
	Two	3	30
	Three	3	30

 

According to the frequency and percentage distribution of the demographic characteristics, the results showed that there were 4 (40%) children older than 12 and roughly 4 (40%) moms between the ages of 29 and 39. Seven (70%) of them identified as Hindu, Six (60%) of the students are in primary school. roughly 5 (50%) of the participants were fathers who worked for themselves, and roughly 8 (80%) were stay-at-home parents. Taking into account the household income, eight people (80%) were making less than Rs. 10,000. About 5 (50%) of marriages were under the joint family category, while 7 (70%) were outside the family. Approximately 40% of mothers only have one kid.

Table 2: Reveals the frequency and percentage distribution of clinical variables among mothers of children with cerebral palsy

     

 

The above table shows the percentage distribution of the clinical variables, with regards to height of the child according to age, 8(80%) were having mild stunting and regarding weight of the child according to age 4(40%) was in 2^nd degree malnutrition. About 7(70%) had no history of hereditary diseases and about 8(80%) had no history of communicable diseases. Regarding the position of child in the family, about 5(50%) of them were first child and their mode of delivery was about 7(70%) through Spontaneous Vaginal Delivery. When considering the gestational age of the child, about 8(80%) were full term babies and head control attained at the age of 3-12 months were about 4(40%). The symptoms of cerebral palsy identified at the age of 6-12 months were about 7(70%) and with no birth injuries at the time of birth were about 6(60%).

 

Exploring the Challenges Faced by the Mothers of Children with Cerebral Palsy by using Colaizzi’s Phenomenological Method

THEME 1

GENERAL DIFFICULTY: CHALLENGES FACED BY THE MOTHERS

(i) Difficulty in raising the child

A common concept aroused from the participants describes that they are unable to raise the child with cerebral palsy without the support from others.

Following are the statements commented by the mothers of children with cerebral palsy,

Participant 1 stated “All my neighbors and relatives told me that it is difficult and there is no use in raising these types of children.”

Participant 6 states “It is difficult for me to handle my child when he is more frustrated.”

(ii) Discomfort in public places with the child

Most mothers describe that it is difficult for them to handle their child in public places or at family functions.

Participant 4 states “In one incident, the priest and others in the temple scolded me and my child for my child’s aggressive behavior.”

Participant 8 stated “No one invites me and my child for family functions as my child does not know how to behave with other children and hurts them.”

 

OVERCOMING CHALLENGES OF GENERAL DIFFICULTY

a) Seeking help from others

Some participants expressed that they need some help or assistance from others in handling the child.

Participant 2: “My elder daughter will help me in taking care of my child.”

Participant 3: “My husband and my mother-in-law support me while lifting the child”

b) Avoiding to go out

Some mothers expressed that they completely or partially avoided attending even the important events or occasions.

Participant 5: “I won’t go to any family functions or public places.”

Participant 9: “When I go to my mother’s house, they themselves will make bad comments on me and my child, so I completely avoided going to my mother’s house.”

c) Preparing the child’s need

Few mothers felt that preparing the needs of the child in advance may help them to lead a normal life when they went outside.

Participant 1 stated “I will prepare milk and food along with diapers when I take my child outside or tour.”

 

  
  THEME 2

PHYSICAL HEALTH: CHALLENGES FACED BY THE MOTHERS

(i) Improper personal hygiene

All mothers verbalize that the child did not know about personal cleanliness.

Participant 10: “My daughter doesn’t know about the personal cleanliness and also her surrounding neatness.”

(ii) Hospitalization during illness

Most of the mothers were concerned about the prolonged hospital stay and severe illness of the child.

Participant 1 stated “I usually take precautions at the earliest to prevent cold or fever in order to avoid serious illness in my child.”

Participant 7: “I take my child prior to hospital once my child shows the minor symptoms of seizures to reduce complications”.

Participant 10 stated “One day my daughter became blue and there was no pulse and movement on her body. On that day I became so tense and anxious about my child.”

 

OVERCOMING CHALLENGES OF PHYSICAL HEALTH

a) Educating about hygiene to child

Not only the mothers but also the fathers of children with cerebral palsy are very strict in educating the hygiene of the child.

Participant 3 stated “My husband teaches the importance of personal hygiene to my son daily, if my son doesn’t follow he used to scold my son.”

b) Managing with medicine

Most of the mothers' manage their child’s severe illness only through the medicines.

Participant 10: “I put tablets to my daughter in advance once she shows the symptoms of seizures. Otherwise, she will become more sick.”

Participant 5: “Before the fits come, I will give a fever tablet to my son.”

 

THEME 3

PSYCHOLOGICAL HEALTH: CHALLENGES FACED BY THE MOTHERS

(i) Difficulty in managing positive and negative emotions

Most of the time many mothers felt trouble in balancing the positive and negative emotions in caring for the child as they were many times frustrated and sometimes happy about their children.

Participant 4: “I feel sad and frustrated, and even became angry thinking about my son. But now things have changed. I am happy with my son because if I go outside to shop, looking at the child's condition, favors will be given for us.”

Participant 6: “I feel happy at most places on seeing his smile, but in some places I become angry and sad if he is not able to do his work.”

Participant 9: “I am the only person to get angry with my daughter because at least one member should be strict in the family, whereas others are always good towards him”

 

OVERCOMING CHALLENGES OF PSYCHOLOGICAL HEALTH

a) Spending more time with child

Some mothers say that they spend most of their leisure time with the children when they are hurted or frustrated by family members and other members in the society.

Participant 1: “I spend most of my time with my son because I feel comfort only when I am with him.”

Participant 3: “I felt happy listening to the sounds and actions done by my son.”

b) Accepting the situation

All the mothers had the common opinion that they should accept the child's condition and adapt to the situation as there is no alternative for them.

Participant 5 commented, “I usually accept the situation and facts because I am the only one who can take care of my child.”

 

THEME 4

DIETARY PATTERN: CHALLENGES FACED BY THE MOTHERS

(i) Difficulty in feeding the child

Most of the mothers complained that they found many troubles in feeding their children as the children were unable to ask for food, take food by themselves and chew and eat.

Participant 7 explains: “My son is not able to say what he wants to eat but takes an extra amount of food if he likes the food. With that I came to know that if I give this food he will eat more.”

Participant 2: “My son doesn’t like to take the food or eat by himself but if I feed him with my hand he will eat more.”

OVERCOMING CHALLENGES OF DIETARY PATTERN

a) Preferring easily chewing foods

Some of the mothers prefer to feed easily chewing and smashed foods to their children to reduce the aspiration.

Participant 1 utters: “I always prefer to give grinded and smashed foods to my son for easy swallowing.”

Participant 10: “My daughter used to take the foods that are soft and smashed, more in amount than that of the chewable foods.”

b)  Scheduling food time

The mothers of all the children scheduled the food time for their children in order to nourish the baby.

Participant 8: “My son usually shows hands pointing to the kitchen as I practiced his food timings on time. Once he is hungry he shows the direction of food preparation and from that I can understand that he is more hungry.”

 

THEME 5

ELIMINATION PATTERN: CHALLENGES FACED BY THE MOTHERS

(i) Unable to communicate the elimination needs

Mothers were distressed by their children's inability to communicate their bowel movements and their urination and feces in the living space.

Participant 4: “My son is unable to say that he needs to pass urine or stool, but passes on himself or in the living area itself.”

Participant 8: “My son will pass urine and stool in the sitting place itself, once I am busy or delayed in taking him to the bathroom.”

 

OVERCOMING CHALLENGES OF ELIMINATION PATTERN

a) Rewards and punishments

Nowadays, mothers are smart as generations pass because they know very well how to handle and train their children by providing rewards and punishments to their children.

Participant 6 stated “I give hugs to my son if he correctly passes urine in the bathroom.”

 

THEME 6

SPIRITUAL PATTERN: CHALLENGES FACED BY THE MOTHERS

(i) Losing faith in God

Many mothers are having loss of faith in God due to their child’s condition which makes them withdraw from their religious practices and make a pause in worshiping the God.

Participant 2: “I had a bad impression on God and kept all the God’s photo aside for some days.”

Participant 3 said “I cursed God for not helping me and my child. So, I paused my prayers for a few days.”

 

OVERCOMING CHALLENGES OF SPIRITUAL PATTERN

a) Lots of prayers

Though generations have passed, many mothers follow and believe in spirituals and religious faiths. All the mothers of children with cerebral palsy also had strong faith in gods with lots of prayers for the betterment of their children.

Participant 10 stated “My daughter is a blessing from God, because he knows who takes better care of children with the disease.”

Participant 6: “I pray to God daily, that I need my son to be normal one day.” 

 

THEME 7

FAMILY SUPPORT: CHALLENGES FACED BY THE MOTHERS

(i) Financial burden

Maximum number of mothers faced economic challenges not only because of the children’s condition but also due to the lack of support from the husband and family members in running the family and providing special care to the child. While in some of the families, the mother and child with cerebral palsy get good support from their husband.

Participant 3 stated “My husband is not going for a job because of my child’s condition, he is sad and became alcoholic. So, I myself am going for a job and getting the scheme amount for my son in order to balance the financial burden.”

Participant 4 uttered “I am taking care of my family by keeping my own gold jewels in the shop to fulfill my family needs.”

 

OVERCOMING CHALLENGES OF FAMILY SUPPORT

a) Discussing problem with others

Mothers usually were not willing to share their child’s condition with others as there is no use of sharing, only bad words and curses were happening to them. In some cases, mothers were not even ready to share their feelings even with their husband because he might also become sad and frustrated.

“I won’t share my child's condition with others mostly, if sometimes I do, it's just a small incident. I mostly motivate myself to take care of him.”(Participant 6)

 

THEME 8

FUTURE GOALS: CHALLENGES FACED BY THE MOTHERS

(i) Inability to perform basic needs

Most of the mothers are worried about their children as they are unable to perform and fulfill their basic needs.

Participant 10: “My daughter cannot perform her basic needs; she always needs someone to do her activities. I am more worried about her seeing this most of the time.”

 

OVERCOMING CHALLENGES OF FUTURE GOALS

a) Performing daily life activities

All the mothers came into the common goal that their children need to perform their daily living activities by themselves without seeking help from the others. Some mothers had the goal that their children should become an achiever in the future while some mothers are not having any goals for their children.

Participant 1 states “My son should become a doctor in future and to serve children like him.”

Participant 9: “My daughter should not depend on others for future needs and can be able to perform their day to day activities.”

DISCUSSION OF THE RESEARCH FINDINGS

The objective of the study is to explore the challenges faced by the mothers of children with cerebral palsy. The researcher developed 8 themes and 23 sub-themes from the challenges explored by the participants with the help of thematic analysis. The findings of the study were discussed with references to the objective assumption stated. In this section, the major findings of the present study have been discussed with the reference to the result obtained by the other researcher.

The result of the study was similar to the qualitative study conducted by Madzhie, et al., (2020) at Mutale Municipality to ascertain the challenges faced by mothers with children who have CP. Unstructured interviews were conducted with 12 participants and data were analyzed using interpretative data analysis. The results showed that the challenges faced by mothers with cerebral palsy children were social and psychological. The study concluded that these specific types of support should be given to these mothers and indicated that cerebral palsy is a condition that requires a lot of care from parents and that there is lack of support and understanding of the condition from family and friends.⁽¹⁸⁾

Another finding of the study is supported by a similar qualitative study conducted by Flavia Rabello et al., (2021) among 19 mothers of children with CP, in a public higher education institution, in the state of Minas Gerais, Brazil. The interview was used for data collection and for data interpretation, content analysis was used. The results revealed that the diagnosis of a child with CP resulted in major changes in the family’s daily life, increasing their responsibility and demands. The mothers had oscillating feelings, with progressively replaced by her motherly ability to take care, reestablishing the psychic balance and reported a great concern with hygiene habits and frequent visits to the hospitals.⁽¹⁹⁾

CONCLUSION:

The findings of the present study revealed that the mothers of children with cerebral palsy faces many challenges such as difficulty in raising the child, discomfort in public places with the child, improper personal hygiene, hospitalization during illness, difficulty in managing positive and negative emotions, difficulty in feeding the child, unable to communicate the elimination needs, lots of prayers, economic challenges, discussing problem with others and perform daily life activities. The most prevalent challenges in this study were difficulty in raising the child and discomfort in public places with the child which is a major challenge for mothers of children with cerebral palsy. Majority of the mothers used to overcome their challenges by accepting the situation and seeking help from others.

These findings also indicate the important role for the child health nurse to motivate the mothers by creating awareness through provision of information booklets regarding cerebral palsy children and overcoming challenges.

 

RECOMMENDATIONS FOR FUTURE STUDIES

Based on the findings of the present study, the following recommendation have been made,

· Similar studies can be conducted in different settings.

· The study can be replicated with larger samples.

· The study can be done as an experimental study for mothers of children with cerebral palsy.

· A mixed research design of qualitative and quantitative methods may be valuable for further studies of mothers of children with cerebral palsy.

· Longitudinal study can be done to establish more findings regarding the mothers of children with cerebral palsy and the importance of overcoming their challenges.

· Comparative study can be conducted to find out the difference between the knowledge of cerebral palsy of urban and rural mothers.

REFERENCES

[1] Raphulu Phumudzo, Modjadji Linda Shirindi, Mankwane Daisy Maria Makofane. Mothers caring for children living with cerebral palsy: Suggestions for psycho-social support, Social work (Stellenbosch. Online), 2021, Vol.57(7):3. https://doi.org/10.15270/52-2-952.

[2] Peter Rosenbaum, Cerebral palsy: what parents and doctors want to know, BMJ, 2003, 326(7396): 970–974. doi: 10.1136/bmj.326.7396.970

[3] Surveillance of Cerebral Palsy in Europe. Prevalence and characteristics of children with cerebral palsy in Europe. Dev Med Child Neurol. 2002;44:633–640

[4] Malgorzata Sadowska , Beata Sarecka-Hujar, Ilona Kopyta, Cerebral Palsy: Current Opinions on Definition, Epidemiology, Risk Factors, Classification and Treatment Options, Neuropsychiatric Dis Treat, 2020 Jun 12:16:1505-1518. doi: 10.2147/NDT.S235165.

[5] World Health Organisation (WHO), 2010, Community-based rehabilitation: CBR Guidelines, UNESCO, Geneva

[6] Banerjee TK, Hazra A, Biswas A, Jayanta Ray, Trishit Roy, Deepak K. Raut, Arijit Chaudhuri & Shyamal K. Das, Neurological disorders in children and adolescents. Indian Journal of Pediatrics, 2009 76(2):139–146. doi: 10.1007/s12098-008-0226-z.

[7] Odding E, Roebroeck ME, Stam HJ. The epidemiology of cerebral palsy: incidence, impairments and risk factors. Disability and Rehabilitation, 2006;28 (4):183–191. doi: 10.1080/09638280500158422

[8] Breslau N, Staruch KS, Mortimer EA., Jr. Psychological distress in mothers of disabled children, American Journal of Diseases of Children. 1982;136 (8):682–686. doi: 10.1001/archpedi.1982.03970440026007

[9] Parkes J, McCullough N, Madden A, McCahey E. The health of children with cerebral palsy and stress in their parents, Journal of Advanced Nursing, 2009;65 (11):2311–2323. doi: 10.1111/j.1365-2648.2009.05089.x.

[10] Davis E, Shelly A, Waters E, Boyd R, Cook K, Davern M. The impact of caring for a child with cerebral palsy: quality of life for mothers and fathers. Child: Care, Health and Development. 2010;36(1):63–73. doi: 10.1111/j.1365-2214.2009.00989.x. 

[11] Parkes J, Caravale B, Marcelli M, Franco F, Colver A. Parenting stress and children with cerebral palsy: a European cross-sectional survey. Developmental Medicine and Child Neurology. 2011;53(9):815–821. doi: 10.1111/j.1469-8749.2011.04014.x.

[12] Kazak AE. Families of chronically ill children: a systems and social-ecological model of adaptation and challenge. Journal of Consulting and Clinical Psychology. 1989;57(1):25–30. doi: 10.1037//0022-006x.57.1.25. 

[13] Friesen BJ, Koroloff NM. Family-centered services: implications for mental health administration and research. The Journal of Mental Health Administration. 1990;17(1):13–25. doi: 10.1007/BF02518576. 

[14] Viscardis L. The family-centred approach to providing services: a parent perspective. Physical and Occupational Therapy in Pediatrics. 1998;18(1):41–53. 

[15] Raina P, O’Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115(6):e626–e636. doi: 10.1542/peds.2004-1689. 

[16] Ketelaar M, Volman MJM, Gorter JW, Vermeer A. Stress in parents of children with cerebral palsy: what sources of stress are we talking about? Child: Care, Health and Development. 2008;34(6):825–829. doi: 10.1111/j.1365-2214.2008.00876.x. 

[17] Somashekhar Nimbalkar , Shyamsundar Raithatha , Rutvij Shah, Dhara Antani Panchal, , A Qualitative Study of Psychosocial Problems among Parents of Children with Cerebral Palsy Attending Two Tertiary Care Hospitals in Western India, ISRN Family Med, 2014 Feb 20;2014:769619. doi: 10.1155/2014/769619

[18] Madzhie M., Mphephu, KE, Balogi,V, & Chueng M, The challenges experienced by mothers with children suffering from cerebral palsy: A study conducted at Mutale Municipality, South Africa. Congent Psychology, 2022.9(1). https://doi.org/10.1080/23311908.2022.2043020

[19] Rabello F, Prado HV, Angelo GL, Martins MB, Carneiro NCR, Borges-Oliveira AC. Mothers of a child with cerebral palsy: perception on the diagnosis moment and the child’s general and oral health. Pesqui Bras Odontopediatria, October 2021 Pesquisa Brasileira em Odontopediatria e Clínica Integrada 21(6), DOI:10.1590/pboci.2021.144