Co-occupations: The caregiving challenges of mothers of children with cerebral palsy

Introduction

Cerebral palsy (CP) is the most common cause of physical disability in childhood (Reddihough and Collins, 2003). In Iran, the prevalence rate is two per 1000 live births (Joghataei et al., 2002), which is fairly similar to the rate reported from other countries (Johnson, 2002; Yeargin-Allsopp et al., 2008). Impaired motor function is prominent in children with CP, and therefore, the majority of these children require various levels of help in self-care functions such as dressing, feeding, bathing, and functional mobility (Brehaut et al., 2004). Children with CP may also have problems managing many of their own routine daily activities and require long-term support from their families (Novak et al., 2009).

Mothers of children with CP play a key role in the provision of care and they, therefore, have to spend a considerable amount of time in caregiving activities (McCann et al., 2012; Rassafiani et al., 2012; Sawyer et al., 2011). In other words, most of the daily occupations of these children require mothers' co-occupation to facilitate participation and help to improve their ability to perform the required occupations (Dalvand et al., 2013). Co-occupation refers to the engagement of two people in an occupation, such that each person influences the other person (Pierce, 2003; Zemke and Clark, 1996). It involves aspects of shared physicality, shared emotionality, and shared intentionality. The level of each of these aspects of the co-occupation may vary such that shared physicality and emotionality may be high and intentionally low, but all three aspects are necessary for an activity to be considered as co-occupation (Pickens and Barnekow, 2009). For mothers of children with CP, these co-occupations are often caregiving occupations (Olsen, 2004). Caregiving involves assisting mothers to perform occupations for a child who is unable to do them (World Health Organization, 2001) and this role takes on a completely different significance when a child experiences functional limitations and possible long-term dependence (Raina et al., 2005).

In recent decades, the concept of co-occupation has manifested itself and found its place in the occupational sciences literature (Pierce, 2009). Despite the history and consistency of co-occupations, there have been very few studies about them and there is a dearth of understanding among practitioners with respect to co-occupations (Pickens and Barnekow, 2009). Researchers suggested that the nature of co-occupation may be understood through qualitative studies and future studies could explore ways to identify the quality of co-occupational experiences (Pickens and Barnekow, 2009). Olsen (2004) has described the co-occupations of mothers and children as imperative in their development and growth, and argues that co-occupations are present and flowing in people's lives, and repeatedly emerge from occupational performance. The difference is that while one person is engaged in occupational performance, other people may also be involved in co-occupational performance (Olsen, 2004).

While a child's disability may affect engagement in co-occupation, studies have shown that the health of the caregivers also influences co-occupational performance and developmental outcomes (Righetti-Veltema et al., 2002).

One of the main problems of mothers of children with CP is how to manage chronic disabilities of their children, as well as daily life occupations such as self-care, productivity, and leisure (Dalvand, 2013). In Iran, the primary caregivers of children with CP are mothers (Razavi Afzal et al., 2013). The parent's experience of taking care of their children revealed their hardship and ambiguity because of inadequate family and social support and services (Alaee et al., 2013). The medical model is the dominant paradigm in the Iranian health care system and most occupational therapists apply expertise that focuses on using exercise and activities (Mohamadian et al., 2012). Moreover, there is a lack of continuity of rehabilitation care, non-integrated rehabilitation services, and inadequate educational systems, functional social networks, and social insurance systems for mothers of children with CP in Iran. This shortage causes mothers to face serious challenges in life and extra responsibilities, which cause restrictions in their own everyday activities of daily living (ADL), with poor quality of life (QoL) and wellbeing (Jalili et al., 2013). Identification of the co-occupations of mothers of children with CP may help to understand their caregiving challenges. This, in turn, may also help them to manage their shared lives through co-occupation, and to improve their general wellbeing and QoL. The co-occupation of mothers has not been explored in previous studies carried out in Iran. Instead, the main focus has been on the impact of caring for a child with CP on the mother's QoL.

Therefore, the purpose of this study was to explore co-occupations of mothers of children with CP from the perspective of mothers in Iran.

Methods

This qualitative study was conducted to explore the co-occupations of mothers of Iranian children with CP, using content analysis methodology (Graneheim and Lundman, 2004). Constant comparative analysis was deployed for data analysis. According to participants' experiences and perceptions, concepts and codes were summarized, and categorized based on differences or similarities, and main categories were developed.

Participants

Sixteen mothers of children with CP in Tehran (Iran) took part in this study. The demographic characteristics of the participants are presented in Table 1.

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Table 1.

Demographic characteristics of the participants (n = 16).

Demographic characteristics of mothers of children			n
Age yrs (mean ± SD)			33/2 ± 5/1
Education	Illiterate		1
	High school		3
	Diploma and associate degree		7
	Bachelor's degree or higher		5
Job	Housewife		12
	Part time		2
	Full time		2
Children in family?	1		5
	2		9
	3		2
Socioeconomic status	Low		4
	Medium		9
	High		3
Marital status	Married		13
	Divorced		3
Demographic and clinical characteristics of children			n
Sex	Girls		10
	Boys		6
Age yrs (mean ± SD)			9/4 ± 3/3
Type of CP	Spastic	Hemiplegia	1
		Diplegia	4
		Quadriplegia	6
	Dyskinetic		2
	Ataxic		1
	Hypotonic		1
GMFCS E&R a	I		1
	II		3
	III		4
	IV		3
	V		5

a

GMFCS E&R = Gross Motor Function Classification System Expanded and Revised.

Mothers who were recruited for the purpose of this study had at least five years of experience caring for children with CP, and a willingness to participate in this study and describe their experiences. The study setting was the natural environment: co-occupations of mothers were investigated at their homes, clinics, at school, and in the community.

Data collection

The data were collected via in-depth, semi-structured interviews. The interviews were carried out by the first author (HD) between November 2012 and August 2013. Interviews were conducted at the mothers' homes or at occupational therapy clinics, based on the participant's request. Each interview began with an open-ended question (see Table 2). Interviews also contained probing questions (for example, “Can you give me an example?” and “Please speak more about it?”). The follow-up questions were asked according to information provided by the participant to clarify the concept under study. Questions in later interviews were arranged according to categories extracted. Data collection was continued until saturation. Data were considered saturated when no more codes could be identified and properties and dimensions of the category were coherent or made sense. The duration of the interviews was between 40 and 60 minutes depending on the tolerance and interest of the mothers in explaining their own experiences. Two interviews were repeated in order to clarify some ambiguities during the first interviews and to find some more information regarding the co-occupations of mothers of children with CP. The objectives of the study, interview method, and people's right to participate or otherwise were explained to all participants, and their written informed consents were obtained.

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Table 2.

A sample of main interview questions for mothers.

1. Please describe a day of living with your child? 2. What activities do you do with your child? 3. Would you like to express your experience, perception and feelings about doing activities with your child? 4. What do you think about the process of doing activities with your cerebral palsy child? 5. Which strategies do you think should be adopted to better perform activities with your child?

Data analysis

All interviews were carried out in Persian, which was the mother tongue of both the interviewer and interviewees and other coauthors checked the English version of the translation, coding and the coherence of the categories. The final English version was checked by a native English speaker for the clarity of the language used. Interviews were tape-recorded and transcribed verbatim. Information obtained was repeatedly read to gain a general understanding of it. Then, data were analyzed using constant comparative analysis methods. In the second step, this means that data were divided into meaning units, condensed, labeled as codes, compared constantly to develop sub-categories and categories. Condensing meaning units was done by a process of reducing the text, while maintaining their core, and was coded accordingly. After the process of coding and grouping the codes and obtaining underlying meanings, they were interpreted as main categories (Graneheim and Lundman, 2004); see Figure 1.

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Figure 1.

Summary of steps in qualitative content analysis study.

Results

Mothers of children with CP described their own experiences and perceptions with their children. Categories were derived from the data that reflected common aspects of the experiences of co-occupations of mothers of children with CP. The analysis resulted in four main categories including: (1) coping with self-care problems; (2) efforts to gain treatment follow-up; (3) coping challenges of educational care; and (4) limited parental personal leisure time (Figure 2).

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Figure 2.

Diagram of categories and subcategories of co-occupations of mothers of children with CP.

Discussion

The finding of this qualitative study helped us to reach a better understanding of the experiences of co-occupations of mothers of children with CP in Iran. The results show that co-occupations of mothers of CP children comprise: coping with self-care problems, efforts to gain treatment follow-up, coping with challenges of educational care, and limited parental personal leisure time.

Three sub-categories of coping with self-care problems are the child's personal care, lifting and carrying, and chores outside the home. In rehabilitation, self-care generally involves activities in which the person takes care of oneself (American Occupational Therapy Association, 2008). Some researchers have reported that self-care is a high priority for parents of children with CP (Chiarello et al., 2010, Ostensjo et al., 2008). Chiarello et al. (2010) found that parents' priorities for their children and youth with CP differed depending on age and gross motor function level; however, the most frequent priority for all age groups was self-care. In a qualitative study, parents of young children with CP argued that self-care, mobility, sitting and standing, and play were the main areas in which most parents met the needs of their children (Law et al., 1998). Self-care, including personal care (feeding, dressing, toileting, etc.), lifting and carrying, and outdoor chores, involves co-occupations that require more shared physicality. The reason is that during mother–child interactions in self-care, both sides display physical activity and responsivity. They involve the long-term process that could potentially influence their general health. Family functions and occupational therapists play an important role in the physical health of caregivers to ensure that mothers of children with CP have comprehensive support for self-care (Raina et al., 2005).

The efforts to gain treatment follow-up consist of two sub-categories, including struggling with medical treatment and trying to rehearse rehabilitation exercises. CP has a complex clinical nature, and includes a wide range of levels of disability and numerous complications (Cans et al., 2008). Following diagnosis, CP children need professional help to address their needs, their families normally engage in long-term health care services, and their treatment follow-up continues until a much older age (Miller, 2004). Performing various laboratory tests, imaging and administering numerous medications under medical supervision, and accurate usage of what is prescribed are goal-directed co-occupations which are very stressful for mothers.

In this study, the most important responsibility for mothers in treatment follow-up was to rehearse rehabilitation exercises at home. Occupational therapists may offer mothers opportunities to try rehabilitation exercise and activities, but these experiences should not be forced because they are time-consuming, especially when the mother has a family (Hinojosa and Anderson, 1991). The medical model seems to be responsible for the dominance of this co-occupation in Iran. The medical model appoints the occupational therapist responsible for diagnosis, deciding on appropriate treatment and assuring that treatment is carried out as prescribed (Kielhofner, 2009). Critics of the medical model have emphasized its reductionism and its mechanistic view of the human body and focus on components of performance, and as such, are not occupation-based, limiting occupational therapy scope to those practices that directly affected symptoms or restricted independent functioning in ADL (Cole and Tufano, 2008). Thus, this problem is clearly observed in occupational therapy clinics, where occupational therapist's emphasis on using rehabilitation exercises and activities to relieve symptoms leads to decreased participation in and performance of daily activities, particularly those that are meaningful for the family (Mohamadian et al., 2012).

Meanwhile, there is a tendency toward family-centered services, in which the family work together with service providers to make informed decisions about the services and support the child and family receive (Law et al., 2003). This could potentially provide an increasing basis for the co-participation of the family and the therapist and, to a large extent, reduce challenges related to child care at home (Freeborn and Knafl, 2013; Law et al., 2005).

This study showed that the main challenges for mothers in educational care were accompanying the child in school and in assisting with school homework.

In Iran, CP children that attend physical disability special schools spend around 8 hours each day at school, and during this time their medical/rehabilitation interventions and special care needs might have to be postponed (Sayf Naraghi and Farighi, 2013). Currently, inadequate care, incorrect positioning, and low numbers of caregivers in these schools are really challenging and force families to accompany their child during school time to ensure proper care. Parents spend a large part of their time in school, caring for their child, so that they can prevent unintentional care complications while looking after their child at school (Kakajoibari et al., 2008). Furthermore, many children with CP experience slower speeds and poor quality of handwriting because of poor hand strength and lack of fine motor control (Arner et al., 2008). Mothers are compelled to spend time in supervising their homework. Smits et al. (2010) suggest that they need the information necessary to develop realistic expectations for their child's performance in handwriting because many children with CP have cognitive impairments, learning often occurs with difficulty, and teaching often requires special effort. Furthermore, collaboration between carers and school staff to address the special needs of children with CP, determining the boundaries between parents and educators and above all showing flexibility in traditional homework performance, is essential. Considering assistive technology and showing flexibility in adopting substitute electronic methods for homework performance, which may facilitate the CP children's educational homework performance, could be of great help for both parents and school staff.

In this study, being a playmate for the CP child and engaging in everyday recreations were other co-occupations of mothers of children with CP, which seems to require more shared emotionality. Playing, for disabled children, is mutually beneficial, because playing creates opportunities for the development of gross and fine motor skills, imagination and creativity, and on the other hand it provides the basis for expressing emotions and practicing social skills (Pedretti, 2006). A child with CP may be limited in mobility and energy levels for activities, and may gradually be discouraged to play with toys and discover new activities, and so reduce such activities (Bartlett et al., 2010). Thus, mothers need to create a playful atmosphere and they should express a playful attitude through speech, body language, and facial expression, and the therapist helps parents to read their child's cues and adapt to their behavioral tempo and to develop mutually positive experiences that form the basis for playful processes as the child grows up (Case-Smith, 2005; Rodger and Ziviani, 2006).

Children with CP were found to be more engaged in leisure activities with their parents in comparison with their peers without disabilities (Nobakht et al., 2013). A possible explanation, therefore, is that children in Iran, because of their physical disabilities, spend more time at home instead of playing outside with friends, and thus rely more on their parents for doing leisure activities. With respect to the hardship of coping with CP as a child and caring for a child with this condition, mothers and their children are more in need of leisure and entertainment independently and mutually.

Conclusion

This study is the first in an Iranian context that illustrates the co-occupation of mothers of children with CP. Co-occupation has been described as highly interactive occupations involving two individuals. Knowing the caregiving challenges of mothers of children with CP opens occupational therapist and service providers' eyes to the co-occupations these mothers perform for their children. This makes them more aware of mothers' challenges of caring and their restrictions on the occupations of everyday life. It is crucial that occupational therapists improve skills in building collaborative partnerships with parents to move toward a more family-centered approach. It is also suggested that to understand the challenges of engaging in co-occupations of mothers of children with CP will facilitate health and well-being of the family through participation in enjoyable tasks. There is no doubt that mothers are participating but what is not known is the extent to which the additional burden of caring for the child with CP reduces participation in more typical family activities. This appears to be a critical point to be referenced.

Limitations

One of the most prominent limitations was that this study was conducted in Tehran. Tehran is the largest city of Iran, with a population of 7.7 million, around 11% of total Iran's population (Statistical Center of Iran, 2012). Hence, the co-occupations stated relate to mothers of CP children in Tehran, and the sample selected cannot be taken as the representative of the general Iranian population of mothers who care for a child with CP. Thus, further studies on co-occupations of Iranian mothers of CP children in different cultures and sub-cultures in urban and rural areas are recommended. The lack of the children's, occupational therapists', and teachers' perspectives was another limitation in this study and additional exploration of dimensions of co-occupation for children with CP of their point of view is also warranted. Another limitation was that the data were interpreted by the investigator, which may have biased the findings.

A strength of this study could be the demographic make-up of the mothers crossed socio-economic levels and a full range of severity of disability.

However, more research is required to understand the various factors influencing participation and co-occupations and interaction effects between these factors.

Key findings

Co-occupations of mothers of CP children are: coping with self-care problems, efforts to gain treatment follow-up, coping with challenges of educational care, and limited parental personal leisure time.

What the study has added

An increased understanding of the caregiving challenges of mothers of children with CP in Iran opens occupational therapists' and service providers' eyes to the co-occupations these mothers perform for their children. This makes them more aware of mothers' challenges of caring and their restrictions on the occupations of everyday life.