Exploring the process of health in mothers of children with cerebral palsy: Changing “clinical reasoning”

Abstract

Introduction

The issue of the health status of mothers of children with disability is one that is beginning to be addressed more fully. This study aimed to explore the process of health in mothers during caregiving of children with cerebral palsy (CP).

Method

A qualitative research method with a grounded theory approach was used, including purposive and theoretical sampling. A constant comparative analysis method was adopted, and data were gathered from 15 mothers with CP children through interviews.

Results

The results were grouped into six main categories: Self-neglecting of their health, facing challenges in caring their children, physical and psychosocial damages, perceiving threat of health problems from concern to action, trying to regain their health, and caring in a complex context. “Facing challenges in caring” was extracted as a core concept.

Conclusion

Results showed an urgent need to establish family-centered services in clinical settings and change the “way of thinking” of the health provider system.

Introduction

Achieving the desired level of care for children with cerebral palsy (CP) is largely dependent on the availability and ongoing support of healthy, capable, and well-resourced caregivers. Several studies had shown that, in more than 90% of cases, mothers are the primary caregivers (Razavi Afzal et al., 2013; Brehaut et al., 2004; Montes and Halterman, 2007). Mothers play a crucial role in supporting their children and in managing a multitude of additional care responsibilities that influence children’s health and access to the rehabilitation services. Consequently, these mothers encounter many changes in their routines and roles in terms of physical, psychological and social dimensions which in turn exacerbate negative effects on mothers’ health (Arim et al., 2019; Kaya et al., 2010; Pousada et al., 2013).

In Asian societies, such as Iran, the mothers are the first line of support for disabled children and are expected to take on full responsibility of caring for their disabled children. Furthermore, recent research had shown that various aspects of the health of Iranian mother with CP children were negatively affected by their role as the main caregivers (Ahmadizadeh et al., 2015; Dehghan et al., 2016; Sajedi et al., 2010, 2011). Therefore, policies and programs required to reduce the negative consequences of caregiving and optimize home care provision.

Previous research had focused on quality of life, mothering skills, and challenges in mothers who raised children with disabilities (Bourke-Taylor et al., 2010; Dalvand et al., 2015, 2018; Mendenhall and Mount, 2011). Moreover, tuning into the “mother’s voice” is critical using interviews and discussion with them regarding how they are feeling about different aspects of their health as a ‘takeaway’ message.

Accordingly, qualitative approaches can potentially provide a deeper understanding of this phenomenon that is less recognized due to cultural construction (Vanderkaay et al., 2018). Furthermore, the application of qualitative methodologies can promote and develop our knowledge about what happens to the various dimensions of the health of the mother as a caregiver. Therefore, this study was conducted to explore the different aspects of this phenomenon based on the experiences of Iranian mothers with CP children.

Method

A grounded theory approach was adopted in this research as the general goal was to construct theories in order to understand a relatively new phenomenon. In other words, the approach was considered suitable for studying a known area from a fresh perspective (Speziale et al., 2011).

Participants

The sampling method was carried out in two steps. First, we employed purposeful sampling techniques to achieve both the intensity and variation of the participant sample. Therefore, those mothers who had at least 1 year of experience regarding the caring of children with CP were voluntarily entered into the study (Schell et al., 2013). Second, we used theoretical sampling; a strategy that leads to the emergence and then saturation of concepts, subcategories, and categories (Corbin and Strauss, 1990). Accordingly, 15 mothers of children with CP were recruited from different clinics under the supervision of the University. In two cases, a second interview was conducted to clarify a question that arose during analysis (see Table 1). In total, we performed 17 interviews.

Table 1.

Description of mothers and their child.

Mother	Age (years)	Paid work status	Child’s age(years)	Child’s condition	GMFCS E&R a
1	32	Householder	5	CP, hypotonic with visual impairment and severe intellectual disability	V
2	30	Householder	11	CP, spastic quadriplegia with severe intellectual disability	V
3	30	Householder	5.5	CP, spastic diplegia	III
4	36	Full-time	8.5	CP, diplegia	III
5	35	Full-time	9	CP, dyskinetic	IV
6	36	Householder	11	CP, spastic quadriplegia with moderate intellectual disability	IV
7	45	Householder	15	CP, spastic quadriplegia	V
8	34	Householder	6	CP, spastic quadriplegia	IV
9	41	Householder	13	CP, spastic diplegia	IV
10	42	Full-time	15	CP, spastic quadriplegia	IV
11	28	Householder	4	CP, spastic diplegia	III
12	40	Householder	7.4	CP, spastic diplegia	III
13	29	Householder	1.2	CP, spastic quadriplegia with visual impairment and severe intellectual disability	V
14	26	Householder	4.3	CP, spastic diplegia with visual impairment	IV
15	42	Full-time	13	CP, dyskinetic	IV

CP: cerebral palsy; GMFCS E&R: gross motor function classification system expanded and revised.

^aGross Motor Function Classification System Expanded and Revised (Palisano et al.,, 2008).

The Gross Motor Function Classification System Expanded and Revised (GMFCS E&R) is an ordinal descriptive scale of the gross motor function abilities of children with CP (Palisano et al., 2008) that is used worldwide. An occupational therapist, directly involved in this study, used GMFCS E&R to provide the gross motor function level of children with CP.

Data generation techniques

Data collection included the completion of semi-structured interviews. Interviews started with a general open-ended question about health status. For example, opening questions for mothers included “walk me through from the time you first noticed that your child was CP until now; what was this like for you, and what is your experience of everyday living with your child?” Interviews began with more general questions followed by a gradual progression to more specific and directed questions, according to theoretical sampling. All interviews were carried out in the Persian language, which was the mother tongue of both the interviewer and interviewees. The interviewer was a PhD student with 15 years of clinical experience as an occupational therapist with CP children and their families. Interviews were conducted at home or a neurorehabilitation day clinic, based on clients’ wishes, and lasted about 45–60 min.

Data analysis

The interviews were tape-recorded, transcribed verbatim, and then analyzed word-for-word following the process outlined by Corbin and Strauss 2008; data collection and data analysis took place simultaneously. Every interview was thereby analyzed immediately by the first author; after it had taken place in order to identify ideas and comments that helped to guide the next interview.

Open, axial, and selective coding was applied to the data (Corbin and Strauss, 2014). Open coding involved line-by-line scrutiny and labeling, plus grouping of data into categories and subcategories. Axial coding involved further conceptualization of the categories by specifying the relationships between them and by integrating them into a new form. Finally, the number of categories was reduced and major new categories were generated. Selective coding resulted in one core category which linked to all other categories.

All phases were checked and rechecked several times, based on the recommendation of the grounded theory approach.

Trustworthiness

The study implemented the criteria of credibility, transferability, dependability, and conformability (Lincoln and Guba, 1985) in order to enhance trustworthiness. Analytic triangulation, field notes, and prolonged engagement in the subject matter were used to increase credibility. Moreover, peer checks, the process of reviewing the data, coding the texts separately by two researchers, and integrating their results were used as a technique to establish the credibility of this research, and formal member checking was also applied to improve credibility. A comprehensive description was offered to the participants, including data gathering, data analysis, and data presentation, in order to facilitate transferability of the study so that other researchers might compare the findings to their own research studies. Researchers conducted mid- and end-point debriefing meetings during and after data collection to reflect and discuss the procedures and interpretation of results in order to ensure conformability and consistency. Dependability was demonstrated through similar findings or conclusions reached by the researchers in the study team.

Ethical consideration

The ethical elements of the study were made clear to participants as following: Confidentiality of information, written informed consent to conduct and record interviews, and the right to withdraw at any time during the study (Ethics Committee No.: 801/A/2/1661312).

Results

In this study, a conceptual model on maternal health status in this context emerged from the data through constant comparative analysis. The core category of the model emerged as “facing challenges in caring for children” based on the participants’ views of the process of mother health and other categories related to it as follows: self-neglecting of their health; physical and psychosocial damage; perceiving threat of health problems from concern to action; trying to regain their health; and caring in a complex context.

This model, illustrated as a schematic diagram in Figure 1, clearly demonstrates the relationships between categories. Mothers, who take care of their children with CP put their children’s needs before their own and ignore their health needs (self-neglecting of their health). Furthermore, mothers are faced with challenges in caring for their children that result in mental and physical health problems (facing challenges in caring for children). After a while, if mothers are aware of their own health status, they may be worried about it and identify their own health priorities (perceiving threat of health problems from concern to action). Then, they try to achieve and preserve their health (trying to regain their health).

Figure 1.

Process of health of mothers of children with cerebral palsy.

The relationships between context and categories (the challenges facing them in caring for children, physical and psychosocial damage, perceiving the threat of health problems from concern to action, and trying to achieve health) are interrelated and complex; therefore, the model is dynamic and no directional relationships are assumed.

Self-neglecting: Ignoring own health needs

This category includes four subcategories: struggle to minimize their children’s disabilities, confusion about the child’s disease, self-neglecting, and the nature of continuous care.

Struggle to minimize their children’s disabilities

After the diagnosis of CP, mothers tend to pay full attention to their children health. They struggle to minimize their children disabilities by making multiple visits to doctors and participating in as many tests as are offered. They often spend long periods in rehabilitation clinics.

I am always running; I have been involved in an intensive rehabilitation program for 4.5 years. Every day, I spend 4-5 hours in several clinics to see how much progress my child makes.

Confusion about the child’s disease

Some mothers have no knowledge of their child prognosis. They are not very familiar with this disorder and its treatment, which results in mothers being confused about the child’s disease. One of the mothers says:

I did not speak to anyone for three or four months, so I could not explain to anyone, because I did not know what the disorder was, I did not know how it was done. I disconnected with everyone for about 4 months to nobody asks me about it.

Self-neglecting

The child’s health is the first health priority; mothers put their children’s needs before their own.

I was sick, I had pain, I take analgesic medications two to three times per day so I can do home therapy with my child.

Furthermore, most mothers ignore their personal interests and responsibilities to pay attention to their child health issues.

I (mother) didn’t do anything; I didn’t sew; my child meant everything to me. I was very sensitive to my child health.

The nature of continuous care

Children with CP, based on their types of disability, require continuous caring throughout their life; their needs will change according to age, motor development, and over time. The concepts in this subcategory that emerged from data were full-time care, loneliness in care, and a variety of childcare needs. One of the mothers stated her experiences in the following way:

“Unfortunately, these kids are dependent on their mothers and they should take care of their children with CP from morning to night.”

Facing challenges in caring for children (core category)

The core category, facing challenges in caring for children, involves three subcategories as following: major financial problems, changing performance patterns (routines, roles, and rituals), and mothering issues when caring for their children.

Major financial problems

Mothers were under mental stress due to high rehabilitation and treatment expenses; they felt destroyed by these challenges.

I always live in fear of not being able to afford my child’s medical and other care expenses. Every time I want to buy some things, I need to think that I will have less money for rehabilitation expenses.

Changing performance patterns (routines, roles, and rituals)

They described being faced with highly challenging situations. Changes in routines, roles, and rituals made challenges that affect the health of mothers and create a situation where life disintegrates.

I (mother) become a therapist and a caregiver person, from morning to night; I am involved in my child’s caring and my child’s rehabilitation. At night, I have no energy. I can’t spend time with my husband, and I ignore his needs.

Mothering issues when caring for their child

Mothers perceived that they were under physical, psychological, and social challenges during mothering tasks because of the child’s condition. Mothers have to lift, move, and carry their children on their own, thus leading potentially to excessive stress on the mother’s body.

For about 7-8 years, my son has been overweight and very heavy; lifting him takes so much of my energy. When I tried to lift him, I felt sharp pain in the muscles around my spine.

Furthermore, mothers reported that they face psychosocial challenges when they go outside with their children in the community.

People think that a child with motor disability is a mentally retarded person, who can’t speak, but only drool, and eat pureed food. When my child sits in a wheelchair, people think that he can’t have a normal life like other children. Sometimes, my son and I are walking along the street; suddenly someone puts coins in my son’s hands and says: ‘it’s for you’ as if he is a beggar.

Physical and psychosocial damages

All participants agreed that the mother’s health (physical, psychological, and social) declines.

Deterioration in mental health

The signs of declining psychosocial health include persistent sadness, markedly reduced attention, some memory problems, lack of motivation, lowering of threshold of anger, frustration, and increasing social isolation.

I cannot concentrate, sometimes I read some pages in a book but I cannot keep focused. Even, I felt that I should re-read the book because I did not remember anything from it.

Decline in physical health of mother

Caring for a child with physical disability and major physical impairment severely depletes the mother’s energy and strength; she experiences severe fatigue, weight changes (either loss or gain), and musculoskeletal injuries in many parts of her body.

Now, I want to go for a walk down the road; I have to stop a hundred times, struggle for breath han! han! I cannot really go on; I have lost so much of my stamina.

In some cases, mothers’ musculoskeletal systems can be damaged because of caring for growing children with physical disabilities.

My knee is injured severely from hugging and holding on to my son; I have severely low back pain, shoulder pain…my ankle hurts so badly, and I may need to have an operation performed on my ankle.

Perceiving threat of health problems from concern to action

This category includes two subcategories: alarm about own health and planning to regain health.

Alarm about own health

Mother’s health experience is influenced by her attitude about health. Mothers may experience a decline in health status and begin to perceive their health threats. However, the responses to this status depend on the meaning of these phenomena for that mother. Some mothers may pay no attention to signs and symptoms of any health changes, while others may be much more concerned about their health.

I feel that my body gradually loses strength and my health is in danger. I have had a mental health crisis about what will happen if I lose my health. What will happen to me and my child?

Planning to regain health

If and when this point in time has been reached, mothers will accept their children’s disability and start to develop awareness of importance of their health.

Now I have accepted that this problem is in my life. I accept that I should try to save my life and my relationship with my husband and our families.

Mothers change their attitudes and recognize that their health is important as well. In other words, they find a motivation to take care of themselves.

I thought if I got sick, what would happen to my family. I need to be a healthy woman to look after my child better and manage my family.

Trying to achieve health

Participants perceived that they needed to try to achieve positive health status by developing their capacities and abilities, by managing performance patterns well, so they can accomplish what needs to be done. They need to address and manage stressful patterns in caregiving, to develop resiliency behaviors, and invest in a sense of spiritual values.

Developing their capacities and abilities

The following statement shows that this mother is focusing on becoming stronger (developing capacities and abilities) because of coping with the physical challenges of providing her child’s caring:

Now, I go to yoga and Pilates to strengthen my body; at least, my waist does not go into a muscle spasm from the slightest movement now. I can do more on my own and can focus more on myself.

To develop resiliency behaviors

Some mothers expressed that their attitudes have changed over time (developing resiliency behaviors):

I practice thinking the opposite of mainstream society...to think that way seems right, not the way that society tried to dictate to me. Now, pitying responses do not bother me in social situations.

Invest in a sense of spiritual values

In this study, appreciating and living according to spiritual values were found to be more effective in coping with these situations. The most important sources of spirituality in our study were trust in God, Divine satisfaction, the child as a blessing from God, child as an angel divine, and a test from God. One mother said:

Child rearing is part of my belief in God and his wisdom. Right, (F) is my child, but I take care of her as part of my spiritual fulfillment. Only just for God.

Another mother said about her child: divine test:

I know that there is an otherworld. Someone (God) is always watching me from above. Tomorrow is finally the resurrection. The question and answer have made me relax.

Caring in a complex context

The participants in the study expressed that caring for a child with CP in a complex context has an impact on the process of health of the mothers. The study showed that the process of health could be influenced by the mother’s individual context, factors related to child development, supportive systems, and factors related to the expert practitioner including attitude, skills, and availability.

The mother’s individual context

A mother’s individual context refers to that particular individual’s background while existing resources include personal background (socioeconomic status, level of health literacy, physical properties, mood properties, and employment characteristics) plus their dedication and loyalty. One mother said about socioeconomic status:

If I had a better economic situation, certainly I could get a nurse for my child and have time for myself, but this was not possible.

Factors related to child development

Participants noted the significant role that the health status of the children played in terms of enhancing the health of their mothers. Child development factors were described by participants as involving both individual issues as well as clinical characteristics. During the interviews, mothers who cared for children with low physical and intellectual abilities encountered many more barriers than mothers of children with high abilities:

If I look after my children or another person looks after them rather than me, they (i.e., children with severe intellectual disabilities) don’t understand the difference and do not show any reaction. I am suffering every day for 4 years and this has destroyed my health.

Supportive systems

Supportive systems are needed to enhance maternal health including family, community, and supportive organizations. A mother of a child with CP expressed her experience of family support as following:

“My father and mother, my father –in-law, my mother in- law, my brother, my sister, my husband, my brother’s husband, all of them responded so well, that is, they said well, it was nothing. Well, this is our child; if you do not want your child, she does give us. They were so comfortable with us; they gave us warmth and security.”

The expert practitioner including attitude, skills, and availability

Participants stated that factors related to the performance of an expert were a critical aspect of context; for example, applying family-centered services. A mother said:

Several times, occupational therapists came to my house. They evaluated my house and made some adjustments for example a railing in the bathroom. These corrections protected my body against physical impairments.

Discussion and implications

The mothers of children with CP were faced with challenges related to the caring role that overwhelmed the dimensions of their health and led to a change in their lifestyle. This study discovered that mothers of children with CP struggle to find ways to minimize their children’s disabilities along with ignoring their own health needs. Vanleit and Crowe (2002) reported mothers did not care about their needs for years (Vanleit and Crowe, 2002). Therefore, based on our results, mothers who were heavily involved in rehabilitation services for their children increasingly ignored their own health needs. Similarly, a study emphasized that families of children with disabilities spend significantly more time than families without children with disability in addressing the health needs of their children (Crowe and Florez, 2006). Furthermore, professionals and the system often show very little sensitivity to the implications that clinical recommendations impose a burden on their family and remain far from a practical model that should focus on specific areas of occupation for their children (Hodgetts et al., 2014). Home-based treatment programs, along with many clinical visits, put too much pressure (e.g., time and personal exertion) on families, especially mothers that are rarely understood by therapists.

This study showed that major challenges faced by mothers were as follows: financial stress, changing performance patterns, and complex mothering issues. As Bourke-Taylor et al. (2010) mentioned and as supported by this study, mothers faced with a variety of challenges related to issues around the child such as responsibilities, child’s need, and behaviors (Bourke-Taylor et al., 2010). Therefore, these mothers need to be highly organized, forgetting many bad experiences and financial problems. Furthermore, the daily needs of their children create challenges for parents that directly affect their mental and physical health (Dalvand et al., 2015; Raina et al., 2005).

These challenges may be associated with lack of family-centered services (FCSs) in rehabilitation clinics. Family-centered services are a philosophy about service delivery to children and their families which emphasizes a partnership between the parents and service providers. The service recognizes parents as the experts on their child’s status and needs and as a member of the healthcare team (Rosenbaum et al., 1998). Family-centered services were designed for use in Western culture (Shields and Nixon, 2004). However, studies did not show that FCS was implemented ideally in developed countries (Almasri et al., 2018; Myrhaug et al., 2016). In developing countries such as Iran, health services are provided on a continuum of paternalistic views (Jafarpoor et al., 2020; Shields and Nixon, 2004) and are at the beginning of an era that may provide new knowledge to better implement FCS (Valizadeh et al., 2018). A scoping review (2019) identified core aspects of family-centered care models that included collaboration between family members and healthcare providers, consideration of family contexts, policies and procedures, and patient, family, and healthcare professional education (Kokorelias et al., 2019). Although decades have passed since FCS has emerged, there are challenges to the implementation, especially in developing country, which are limited financial resources (Foster et al., 2010; Shields and Nixon, 2004), a lack of education among healthcare professionals in relation to their understanding of the philosophy of FCS (Asai, 2011; Dalvand et al., 2014; Rostami et al., 2018), and differences in cultural context and institutional structure (Valizadeh et al., 2018; Watt et al., 2013). Therefore, due to several barriers in implementation of FCS in developing country, it may be need to advise other care models or to modify in the current FCS in accordance with the characteristics of the developing countries (Shields and Nixon, 2004).

The results of this study suggested that mothers felt their own physical and psychosocial damages and therefore struggle to regain their own health and to cope with the demands and the responsibilities for their children. Our results showed the importance of accepting child disability by mothers that could help them to find out about personal meaning and motivation in their health. The acceptance of child disability was often viewed as a first step in the recovery process (Larson, 1998). Also, Arpanantikul (2006), in a qualitative study, identified some stages that happened before taking control of self-care in promoting health among the middle-aged Thai women; these stages included “developing an awareness about the importance of one’s health” and “finding motivation for self-care” (Arpanantikul, 2006).

The Health Belief Model (HBM) is one of the most important behavior change models that are widely used to examine beliefs related to preventive health behavior (Becker, 1974; Rosenstock, 1990). The Health Belief Model can be used within context of FCS to develop and implement behavior modification interventions for mothers (Mohammadi Pelarti et al., 2019).

This study showed that mothers use various strategies to establish and preserve their health. Some mothers began to engage in sporting activities or other occupations of interest and meaning to them to increase their physical and mental capacities, thus improving their health status. This is similar to the results of Kuhaneck et al. (2010), who explored coping strategies of mothers of children with an autism spectrum disorder. One theme that emerged was the mothers need for “me time,” particularly through exercise (Kuhaneck et al., 2010).

Based on our results, another important strategy for mothers was time management including planning and having a consistent or at least predictable routine in their lives. This finding was previously mentioned by Stuart and Garrison (2002) who noted that performing role balance in the family had a buffering effect on the relationship between daily conflicts and health status (Stuart and Garrison, 2002).

The ability to manage stressful patterns in caregiving was noticeably important for participants in our study. Some mothers reported that they had improved their child caregiving by following the recommendations of occupational therapists that played a supportive and facilitative role in easing the method of handling, home modification, and using assistive devices.

The mothers in our study reported the importance of appreciating and celebrating spiritual values. In our study, mothers who trusted in God believed their child was a blessing, an angel, and the present situation was a test from God. Consequently, these strategies helped them to protect and promote their health. In this regard, Alaee et al. (2013) found that spirituality was a driving force for the continued care of the child and in helping these mothers to accept their situation and cope with ongoing pressures and problems (Alaee et al., 2013).

Conclusion

In a dynamic process, mothers of children with CP during caring in complex context were faced with challenges that result in mental and physical health problems. They may perceive threat of their health problems and then try to achieve and preserve their health.

This research reminds practitioners about the importance of FCS as a guiding philosophy in service provision. It is important to emphasize the implementation of FCS completely in clinical settings in order to improve the quality of life and health of mothers. The authors hope these findings will assist healthcare providers and policymakers to enhance their understanding of mothers’ problems and encourage them to design better resources and strategies to deal with the unique needs of these mothers.

Key findings

1. Mothers are exposed to challenges during childcare that can affect their health and quality of life.

2. The support of husband and close relatives are imperative in any program for promoting the health of mothers of children with CP.

3. When therapists meet the mother’s needs through FCSs, the mother’s health is less likely to be ignored, and furthermore, it can help to improve her quality of life.

What the study has added

Based on the family-centered service, occupational therapists need to review the context in which the child lives and address the specific needs of parents especially mothers.

ORCID iD

Hamid Dalvand https://orcid.org/0000-0003-2725-5081