Mothers’ challenges and experiences of children with cerebral palsy: a qualitative meta-synthesis

A meta-synthesis draws on the subjective and interpretive nature of existing qualitative research to construct more complete and plausible understandings of reality than what is currently available from the existing literature.¹¹ There are several approaches to qualitative synthesis; in this instance, the meta-synthesis procedures proposed by Paterson et al.¹² was applied to respond inductively to the study questions and to integrate the new knowledge. This method seeks to systematically review the literature and to produce an interpretive synthesis of the results of other qualitative studies. The data, coding, and analysis were undertaken by 2 researchers. First, coding was performed to develop the concepts. In this process, memos were noted down, as well as theoretical concepts about coding and the relationships between them. Throughout the process, a series of concepts emerged. Through team comparison and discussion, sub-themes were then created as categorical elements, which were then grouped into categories. A data matrix was created for each category to analyze the properties and relationships between them, transforming these categories until more precise codes were obtained to classify and reorder the information. Finally, the results of the study were synthesized to explain the central categories and subcategories, to provide a theoretical explanation for the study topic. Meta-synthesis offers more than the aggregation of various characteristics that shape a phenomenon, as it provides a description or full explanation of this phenomenon and distinguishes the similarities and differences between the ideas surrounding an experience.¹³ It involves the process of comparing, translating, and analyzing the original results, which leads to the generation of new interpretations.¹⁴

To provide rigor and validity in the interpretation of texts, 2 researchers worked simultaneously to analyze the texts, identify the topics, and trace their development. Furthermore, in order to seek external consensus and improve the quality of the results, the results were discussed with another researcher.

To guide the systematic search of the literature, the following predetermined inclusion and exclusion criteria were applied, taking into account for preparing the aims of the meta-synthesis (Table 1).

A comprehensive and systematic approach was used to locate the relevant published research studies in the area of mothers’ challenges and experiences of children with CP. Two researchers searched 6 electronic databases for literature: PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Web of Science, Ovid, and the Medical Literature Analysis and Retrieval System Online (MEDLINE). Referencing lists of the selected articles were also reviewed through the snowballing technique, for the purpose of obtaining other related items. Then, the appropriate keywords were used: “mother,” “children,” “cerebral palsy,” “qualitative study.” The search strategies using PubMed as an example can be seen in Figure 1.

Figure 1.

The available literature appeared in February 2021. One researcher imported all records into EndNote reference management software to exclude duplicates. Two researchers screened the titles and abstracts of all records independently to identify studies that appeared to be potentially related to mothers’ challenges and experiences of children with CP. When there is a disagreement, another researcher joined the discussion and decided to include or exclude. then obtained the full text of these articles for review, and thirteen of these met the inclusion criteria.^15–27 This process can be seen in Figure 2, and a summary of the included articles can be seen in (Table 2).

Figure 2.

The included papers were critically appraised according to the Critical Appraisal Skills Program (CASP) checklist for qualitative research. The CASP is a 10-question tool with “Yes,” “No,” or “Can’t Tell” responses, including 2 initial selection questions on the aims and congruence of the qualitative methodology, and 8 questions about design, sampling, data collection, reflexivity among researcher-participants, ethical considerations, data rigor, clarity of findings, and applicability of results. The checklist allows qualitative research evidence to be appraised systematically, guiding the reviewer about the results, their validity, and their transferability. The methodological quality of identified studies was assessed independently by 3 researchers, then researchers got together to discuss discrepancies in scores awarded; where discrepancies could not be resolved, they were discussed with another researcher. The results can be seen in Table 2. They were all included in the analysis.

The care of a child with CP is a source of tension for mothers; they experienced many negative emotions, accompanying different phases of care, including shock, denial, sadness, anxiety, fear, guilt, and even suicidal thoughts.

The mothers of children with CP said that they were shocked and denied when they first learned of the diagnosis.^17,25 Most of the families went to many hospitals to check the diagnosis, because they were in denial. It may destroy their hope of being a mother of a healthy child once they accept that their child has CP.^19,27 Affected by religion and culture, mothers had misunderstood about the perceived causes of CP. Some mothers thought that the reason their child developed CP is because they did not successfully give birth to their child and did not sufficiently nurture their bodies during pregnancy; they felt guilty and blamed themselves.^{16,18,19,24,27} Permanent brain damage from CP meant that there was no hope of being cured, which made mothers feel uneasy and devastated for their child’s future, and they don’t know who’s going to look after the child if something happens to them.^19,27 For some mothers, separation from children was an issue because children lack independence and need help. Mothers feel anxious when their children are not with them.²⁷ The deterioration of the child’s condition causes the mother grief, especially when the mother compares their child to a healthy child, the mother feels guilty and unfair to the child.²¹ During rehabilitation, mothers reported that maintaining a balance between being protective and promoting independence was a challenge for them.²³ Every time the mothers see their child injured during the rehabilitation training, they are in a dilemma. Moreover, the mothers articulated concerns over how stigma could affect their children’s self-esteem and result in psychological damage.¹⁸ Sometimes, mothers experienced a sense of helplessness when confiding the burden on their shoulders, and that nobody could help.

Mothers identified as primary caregiver stressors, that daily caring is difficult and exhausting for them. Because children with CP are unable to walk, the mother takes care of all their needs and they have to be carried continuously, and help them do their daily activities. They reported that they felt worn out.^15,16,19,24 Most of the mothers have >1 child, and they need to take care of every child’s daily life. Mothers said that caregiving affects their well-being and quality of life.^16,22 How the mothers did their best for their child differed from person to person, but all showed a desire to do as much as they could to help their child reach its full potential and highest self-care.

Mothers said that they experienced financial difficulties.^15,19,22 Family incomes were not adequate to cover children’s rehabilitation costs and the mothers’ health expenses. Mothers who gave up work to spend more time with their child lost their financial resources and coupled with it was inadequate medical insurance support, all of which resulted in financial burden.²⁶

Mothers play a major role in the care; they need to spend a lot of time in childcare activities. Long-term care not only increases the mother’s negative emotions, physical burden and financial burden, but also affects personal leisure time and space.^16,20 Sometimes a child’s behavior problems or strange performance may also limit the mother’s social participation.^16,21 The limited social participation further reduces the support from friends and aggravates social marginalization. Furthermore, most of the mothers in the included studies chose to leave the job market and give up their careers to better take care of their children with CP. As is common, mothers work part-time not full-time, to spend more time caring for their children with CP. Choosing between personal values and accompanying their children is one of the challenges they have to face. The Mother’s challenges and experiences, affected by the birth of a child with CP, were described as being due to sudden event; their life and work changed completely.²⁵

Social support refers to the functions performed for the individual by significant (i.e., primary) others, as well as supplied by secondary group members. The most frequently mentioned functions are emotional, informational, and instrumental assistance. Substantial evidence shows that social support is positively and causally related to mental health, physical health, and longevity.^29,30 This theme indicates the main concerns that the mother experienced: lack of support from family and society, marital problems, inadequate or inappropriate facilities and services, and society’s attitude towards the mothers and children with CP.

Mothers believe that children with a disability are a special group in society and draw attention from others. It inevitably leads to exclusion and isolation from society, and the attitudes of ordinary people, which affects their mental health and social participation.^17,21 Most mothers have experienced family incompatibility and disapproval; the family sees children as a burden and shame.^18,23,27 Some mothers not only lost support from family, but also from their husbands;^15,24 they said it was upsetting when the husband would yell at the child and can’t accept them; the sexual relationship in the marriage was also affected.¹⁹ Even worse than that was that family tensions were compounded by sibling rivalry when the child with CP needs was favored.¹⁹ The study shows that mothers’ lack of support from family, friends, and community members will result in their isolation by society.^15,24

Most of the mothers said that they had difficulty in receiving education for their children. They said it is unfair to reject and exclude CP children going to school, since they lack self-care skills.^17,22 As for the mothers whose children were educated, they complained that they suffered social stigma and discrimination from teachers, but were eager to be equal to the others.^15,18,19,22 At the same time, without family support, mothers have to spend most of their time accompanying their children by themselves. Some mothers can’t help children do homework because of limited ability.²⁰

Mothers feel dissatisfied and a loss of trust in the healthcare professionals due to the delay in diagnosis and their impatientattitude.^18,22,27 The worst thing that mothers have experienced is the shortage of therapists and the lack of medical support, which will cause them anxiety. Nearly all mothers experienced physical access problems. Due to the lack of assistive devices for transferring them from one place to another at home or outdoors, children with CP need significant help from their mother. This means that the inadequate facilities increases the burden on the mother.^15,17,21,22 Being faced with inappropriate environments, like narrow sidewalks, barriers, and lack of elevators, mothers have experienced a lot of inconvenience in caring for their children with CP; they felt powerless and worried about their child’s safety when society failed to provide a disability-friendly environment and ignored their needs.^17,21,24

The subjects’ roles are mothers as well as women.²² When their children were diagnosed, they are required to adapt to the role of the mother of children with CP as soon as possible. The theme shows that the mother can handle various difficult tasks and achieve positive growth during the caring process. Their views on the future of their children have also improved, even though they were anxious at first. As mothers, they saw their child grow as an individual and become adult in society.

Mothers try to adjust themselves by using supporting networks as a mechanism to facilitate their adaptive responses.¹⁷ The family sees a child with CP as normal, and they do not hide them anymore. More and more people’s attitudes have changed about mothers of children with CP, and because of that, mothers of children with CP can fit in society.^16,21 They said that social participation can reduce their levels of mental distress and help them to move their focus from their child to themselves for a short time.²¹ Mothers said communication and shared experiences with peers is also a good way to release pressure and encourage one another.¹⁷

Mothers reported that they could not accept the truth that their children are undergoing CP, but they are glad to say that they are past that now.^16,19 They realized that overprotection could result in their children losing the possibility of developing skills that would enable them to live independently in the future.²³ Therefore, they try to establish a good relationship with medical staff and trust them, developing their children’s self-care skills through cooperating with medical treatment and performing rehearsed rehabilitation exercises. For the children with CP who have difficulty communicating, mothers put emotional investment in the child’s communication process.²⁶ To promote their children’s participation in society, mothers tried to reconstruct good situations like going out everywhere with the child; they strive to create opportunities for children, to avoid being isolated by society.^17,26 Some mothers have also become a playmate with their children.²⁰ After long-term care, mothers have the aspiration for their children’s future and wish that their children might be able to lead a healthy life like an ordinary child.^16,18

This review focuses on mothers’ challenges and experiences in caring for the children with CP, without involving fathers or other caregivers. The diagnosis of CP is a traumatic event for family; future research is required to explore the individual experiences and challenges of different family members.

Although great efforts were made to identify all relevant articles, there may be articles that were missed. Even though we attempted to include evidence of the challenges and experiences of mothers worldwide, 8 of 13 articles were from Asia, 2 of 13 articles were from Africa, and 1 article each from Europe, North America, and South America. It would be better to have a more even distribution worldwide.