Stress Levels and Coping Strategies in Mothers of Children with Cerebral Palsy

Introduction

Cerebral palsy (CP) is a non-progressive but permanent disorder that results from damage to the foetal or developing brain, leading to partial losses of motor and cognitive functioning (Shelly et al., 2008). Parents are prone to stress related symptoms associated with the rearing up of children with CP. Stress of caregiving and raising a child with CP is seen as a combination of increased needs for the child care and emotional reactions caused by the child’s condition (Kleitman, 2006). Chan (1993) defined stress as arising out of the relationship between the individual and his environment.

It is considered to be a byproduct of the subjectively defined demands of a situation and the capacity of an individual or a group to respond to these demands.

Studies on associated stress by Deater-Deckard and Scarr in 1996 and Ostberg and Hagekull (2001) reported that major life events and daily care-taking demands resulted in increased parenting stress. Children with CP may also lag behind their peers resulting in frequent feelings of anxiety, helplessness, and frustration on the part of the parent (Kolb & Whishaw, 1985). Ribeiro, Porto, and Vandenberghe (2013) reported that parents of children with CP are likely to have their health affected by higher levels of stress.

Coping refers to a variety of behavioural and cognitive strategies, individuals use to manage their stress (Folkman & Moskowitz, 2004).Folkman and Lauzarus (1980,1985) differentiated between two major styles of coping: problem-focused and emotion-focused. The former involves dealing with the source of stress, whereas the latter reflects attempts to handle thoughts and feelings associated with the stressor. Ganjiwale et al., (2016) reported that Problem focused coping and active emotional coping is associated with good QOL. According to Tatjana and Marina (2012) reframing, which is a problem focused coping strategy was used most frequently by families of children with CP.

Need for the study: A systematic review of the literature revealed that much of the research in this domain in our country is limited. In India when compared to fathers, mothers are the one who take up a challenge to bring up the child with physical disability with the aim of making them independent in their lives in all the aspects possible, by taking professional help and guidance through the intervention programs. During this process these mothers undergo a lot of stress due to family, society, child’s physical disability, socio-economic status of the family, travelling to other places for the child’s rehabilitation purposes, medical costs of the child’s treatment and many more other influencing factors. Some mothers will begin to use the coping strategies in order to overcome the stress, while others may not. It is essential to study the stress levels and coping strategies used by the mothers and the ways in which they cope in stressful situations so that an insight is obtained on the ways in which they deal with stress. This may have an influence on the way in which they deal with their child. Birth of a child with CP changes the functioning of the family. If these changes are accompanied by unsuitable coping strategies, this may result in disturbed marital and other family relationships as well as professional relations, which leads to further anxiety in the family. Though, the medical risks and neurological effects associated with CP are clearly defined, the psychological effects including stress levels and coping strategies in families with a child with CP have not been fully analyzed. Keeping this in view, the study was planned. This in turn will help the speech -language pathologists to provide appropriate guidance to the mothers regarding stress management during intervention.

Aim

The present study aimed at assessing the stress levels and coping strategies in mothers of children with CP. The specific objectives included: a)To study the stress levels and its relation with severity of CP and duration of intervention and b)To investigate the coping strategies, both problem-focused and emotion-focused (PFCS & EFCS) and its relation with severity of CP, and duration of intervention.

Method

A total of thirty mothers of children with CP participated in the study. These children and their mothers were recruited from the clinic and pre-school centre. The children were in the age group of 3 to 12 years and were diagnosed by a qualified team of professionals. NIMH SES rating scale (Venkatesan, 2011) was used to assess the SES. All the mothers belonged to the lower middle class and middle class families. The level of gross motor impairment of the participants was assessed using GMFCS E & R (Palisano et al,1997; 2007) All the children had been attending an intervention program for a duration ranging from 2 months to 5 years.

Brief Cope (Carver et al., 1989) was used to assess the coping strategies. This scale consists of 28 questions which are grouped under problem focused coping strategies & emotion focused coping strategies. Life Change Index scale (Holmes & Rahe, 1967) was used to assess stress. It comprises of 43 stressful life events that can contribute to illness. Higher score indicates higher likelihood of developing illness.

Mothers were interviewed in a less noisy room with face to face interview method and their consent was obtained. Both the questionnaires were administered, following which the responses were documented in the scoring sheet. For the obtained data, appropriate statistical procedures were carried out using SPSS 22.0 version package.

Results and Discussion

The mean of stress scores was 186.10 which indicated that the mothers of children with CP were likely of having illness in near future of about 50%. Almost 50% of the mothers in the current study had moderate to high levels of stress which is in agreement with the literature. Four mothers had a positive history of suicidal attempt. It was also found that the stress negatively correlated with severity of CP, but positively correlated with duration of intervention. These results are in agreement with the study by Ong et al., (1998) and Ribeiro, Sousa, Vandenberghe and Porto (2014). Ribeiro et al., (2014) reported that about 45.3% of the mothers presented high levels of stress.

The mean values and SD of PFCS & EFCS were 45.86 ±10.30 and 21.76±6.54 respectively. Both PFCS and EFCS positively correlated with severity and duration of intervention. This indicated that the mothers were using PFCS to a greater extent to cope with their stress. This is in agreement with the finding by Tatjana and Marina (2012). This could be due to the effect of counselling and guidance that was provided during the intervention program.

Summary and Conclusions

Parenting a child with CP presents a number of challenges and stress. The findings of the present study revealed that mothers of children with CP experienced moderate to high levels of stress. However, they were using PFCS. A relationship was also found between stress and coping strategies with other variables considered. Further research should include both individual and family strategies of coping with stress caused by raising a child with CP.

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