COPING STRATEGIES OF PARENTS WITH PHYSICALLY AND MENTALLY CHALLENGED CHILDREN

ABSTRACT
The Purpose of this study was to examine the coping strategies utilized by parents who have physically or mentally challenged children in Enugu Urban. The study surveyed 154 consenting parents who have children enrolled in Therapeutic Day Care Center Enugu and Government School for the Deaf and Dumb Ogbete Coal Camp, Enugu using descriptive survey research design. Purposive sampling was used for this study to select 2 schools out of the 3 special schools in Enugu Urban, while convenience sampling was then used to reach the respondents. Parents coping strategy questionnaire (PCSQ) was used to identify the coping strategies of parents. Focus Group Discussion (FGD) was also organized using Family Coping Strategy Interview Guide (FCSIG) in order to identify other strategies not captured through the questionnaire. Descriptive statistics (Means and Standard Deviation) were computed for the demographic variables and the various coping subscales. Statistical analysis was done using MANOVA with alpha set at 0.05. The results showed that parents with physically and mentally challenged children used a combination of coping strategies. The data analysis revealed that the most frequently used coping strategies were; Spiritual Coping strategy (M = 4.67), Personal/Family resources coping strategy (M = 3.85) and External Social Support (M = 3.49). The least coping strategy used by parents was Denial coping strategy (M = 2.98). Parent’s of physically challenged children significantly used external social support more (F(1,152) = 10.59, p < .01) than parents of mentally challenged children. Significant interaction effect was found between age and education in the use of denial coping strategies (F( 1, 142 = 4.96, p < 0.5). These results suggest that parents used a wide range of coping strategies which appeared more helpful to them than any one single strategy. Also, the fact that parents of physically challenged children appear to significantly use external social support more than parents of mentally challenged children suggest  that parents of the physically challenged are more connected to others and more ready to disclose their problem to people. It is therefore recommended that professionals in this special area should organize and establish association of parents of children who are physically or mentally challenged. This will create an avenue for interaction with one another, exchange of ideas, and expression of feeling which will lead to better coping.
 
 
 
 
 
CHAPTER ONE
Introduction
Background to the Study                            
The contemporary world is filled with a never ending array of challenges and numerous factors are responsible for that, (Bennibor 2007). One of such challenges is the burden of caring for a physically or mentally challenged child. The birth of a normal child can have a significant effect on the family dynamics. For this reason, parents and other children in the family must undergo a variety of changes to adapt to the pressure of a new member (Hussain and Juyal 2007). More profoundly, the birth of a physically or mentally challenged child to a family constitutes a serious burden that poses obvious challenges to parents. These challenges could include the time required for extra care, increased financial demand, stigmatization, psychological and social burden among others.
 
Dykens (2000) described physical challenge or disability as lack of ability relative to a personal or group standard or norm which may involve physical impairment such as sensory impairment limiting sensory function, or motor impairment limiting mobility. Such physical disabilities include; deafness and dumbness, blindness, being crippled, or the malfunctioning of some parts of the body which limits the effectiveness with which a child can cope with the academic, social and emotional expectations of the school and community. Mental challenge on the other hand according to Hodapp and Dykens (2001) is a form of mental retardation marked by I Q (intelligent quotient) score of less than 75 and limited ability to carry out daily living skills. It includes children with Down’s syndrome, cerebral palsy, autism among others. A person is mentally challenged if he is unable to dress, feed, or otherwise care for himself or herself, to hold a job or carry out most of other tasks needed to get through an ordinary day.
 
Looking at the prognosis of physically and mentally challenged children, Stanley (1998) stated that parents of physically challenged children know what their goals for a child should be. Based on that, they can draw on his or her many capabilities to help him or her achieve those goals. According to him, the motor and sensory systems are not the only capabilities children have and parents of physically challenged children can take advantage of even limited motor ability. A child, who has one arm that is working well, can reach for things and show what he wants. Even without good functioning arms, the child can convey ideas verbally or with signals if he has sensory deformities. He or she can be meaningfully engaged to enjoy life within the limits of his or her disabilities resulting in a good prognosis. The prognosis for children with mild to moderate mental retardation is  also said to be usually good since these individuals can often become self sufficient to some degree. However, they may require some educational, community, social, family and vocational support in order to establish routines that will help them to function within the limits of their challenges. The outcome is less promising for those with severe to profound mental retardation. Those that survive, sometimes lack the ability to perform basic routine activities like (toileting, bathing, feeding or dressing themselves including basic academic skills like reading, writing and arithmetic) indicating that the prognosis is poorer than for those children with physical challenges.
 
The presence of a physically or mentally challenged child in a family can lead to family disintegration if not properly handled, even in the happiest of families. It can cause a clash between parents, siblings, and individuals within a family to the extent that family cohesiveness may be threatened or even destroyed. Ambert (1999) stated that the everyday task of feeding, toileting, traveling and communicating are much more physically and emotionally demanding for parents who have children who are physically or mentally challenged. These challenges require that parents should adjust or cope using different coping strategies in order to be able to handle the situation or reduce the weight of the burden.
 
Coping involves using psychological resources and strategies that help to eliminate, modify, or manage a stressful event or crisis situation (Mc Cubbin & Patterson 1983). It is the process of managing tasking circumstances, expending effort to solve personal and interpersonal problems and seeking to master, minimize, reduce or tolerate stress or conflict. The coping ability of parents with physically or mentally challenged children depends on several factors such as the amount and severity of pressure from individuals and the society, body constitution, culture, educational background, economic status, health predisposition, presence of social support system and religious background (Hargreaves & Tizard, 1999). Kwai-Sang Yau and LI- Tsang (1999) added that parents’ ability to cope with the stresses of raising their children with special needs depends on the family’s interpretation of the crisis event, family’s sources of support, resources available and family structure. Parents need to adopt coping strategies that will enable them manage the challenging situation of caring for their physically or mentally challenged children. Coping Strategies according to John and MacArthur refers to specific efforts, both behavioural and psychological, that people employ to master, tolerate, reduce or minimize stressful events. They are behavior, thought and feelings that helps us to function better in a given situation.  The coping strategies utilized by parents was considered in four dimensions; Personal/family support coping strategy, external social support coping strategy, spiritual support coping strategy and denial coping strategy. Pritzalaff (2001) stated that Personal/Family support coping strategy is the ability of individuals and families to actively engage in acquiring support from themselves and family members (e.g.having confidence in oneself and maintaining cooperation and oneness with partner). External social support means acquiring support from friends, neighbors, extended family, agencies, church group and institutions. Spiritual support is finding comfort in a higher supernatural belief system (e.g. having faith in God). Denial coping strategy includes efforts to deny, minimize or escape the stressful situation (e.g. I try to deny the existence of the problem).
 
Statement of the Problem
Documented evidence shows that parenting of a normal child in any family is always a challenging job (Tizard 2007). Therefore the birth of a physically or mentally challenged child in the family at any phase of family life poses an additional burden for parents and demands extra coping ability. One stressor for parents of physically and mentally challenged children is that they may continue to care for their child for extended periods of time. There is also the need for providing additional items and care such as special equipment like communication devices, walking aids, special schools, home modifications, time and patience required for extra care. All these pose increased financial, psychological and social demands on the parents, and consequently affect parents’ emotional, physical and psychological wellbeing. Another stressor is the negative attitude of the society towards such children. Sometimes, people keep away from them making them to feel lonely and isolated. Although this attitude is gradually changing, it has not completely phased out. Adding to the parents stress is the difficulty in locating appropriate services and educational facilities for their children. Sometimes, even when these services are located, they are hardly affordable by the average parent. There is also the stress and challenges of moving from one health professional to another seeking for a more promising diagnosis which may never come to reality.
 
 Paulo (2002) reported cases of abused and abandoned physically and mentally challenged children in Uganda in his study of children with disabilities. The researcher’s informal interaction with staff of some of the special institutions showed that there were (3) cases of abandoned children following their parents’ inability to cope with their care. 
Having a child who is physically or mentally challenged creates a crisis event for which parents have little or no preparation. However, how parents respond to the challenges of raising their child with disabilities depend on a wide variety of factors influencing their ability to cope, such as their interpretation of the crisis event, and family sources of support. Abbort & Meredith, (2000) opined that personality characteristics of the family members, their financial status, individual resilience, problem solving skills and spirituality all influence a family’s ability to cope. It is on this premise that the researcher was prompted to examine the coping strategies utilized by parents with physically and mentally challenged children in Enugu Urban.    
 
Purpose of the study               
     The purpose of the study was to examine the coping strategies utilized by parents who have physically or mentally challenged children in Enugu urban.
 
      Specific Objectives of the study are:

1. To identify coping strategies (thoughts, feelings, actions and plans utilized by parents of physically or mentally challenged children to effectively manage these special children.
2. To determine the differences in the use of various coping strategies utilized by parents of physically and mentally challenged children in coping with the care of their children.
3. To determine any influence between age, income, and education on the coping strategies utilized by parents with physically and mentally challenged children.

 
 
Research Questions
 
The following research questions were posed to be answered at the end of this work.
 

1. What are the coping strategies (thoughts, feelings, actions and plans) used by parents of physically and mentally challenged children to effectively manage their special children.
2. What are the differences in the use of the various coping strategies by parents of physically and mentally challenged children.
3. What influences do age, income, and education have on the coping strategies utilized by parents of physically and mentally challenged children?

 
Significance of the study
Physical and mental disabilities are enduring conditions that can be very incapacitating.
It therefore needs a lot of evidence based information to convince parents and those who care and work with such children with special needs that life can still go on smoothly despite the challenges they face in caring for these children.
Result of this study will therefore help professionals and individuals who work in this special area in counseling and educating parents of physically and mentally challenged children on the different coping strategies available for their use.
The findings will also help health professionals, especially nurses who are always in contact with these parents to find out differences in the use of the various coping strategies by the two groups of parents. This information will help them in counseling and educating parents on the use of various coping strategies bearing in mind their peculiar circumstances.
In addition, results of this study will  help parents and families to identify other coping strategies that can help them to deal with the challenges of caring for their special children apart from their individual and family strength. This can be achieved by publishing the result of this study in the appropriate journal that will be accessible to them and depositing some copies of this work in the libraries of the schools used for this study.
Evidence based information on the interaction of age, income and education and coping strategies used by parents will also guide individuals and professionals in counseling and educating parents. For instance, the interaction between age and education on denial coping shows that parents should be educated on healthy coping strategies and not maladaptive coping like denial. Denial may be helpful when used for a short period of time; however, excessive reliance on them prevents personal growth and adjustment.
Finally, the results of this study will be a prompt to further investigations in this area and will also add to the body of existing knowledge in this special area of study.
 
Scope of the study
The study is delimited to coping strategies ( thoughts, feelings, actions and plans) utilized by parents of physically and mentally challenged children to effectively manage their special children, the differences in the use of the various coping strategies by the two groups of parents and the influence of age, income, and education on the coping strategies utilized by these parents. It is limited to parents of physically and mentally challenged children in special institutions in Enugu Urban.
 
 
 
Operational Definition of terms
Coping Strategies in the context of this study refers to:  thoughts, feelings, actions and plans that help to effectively manage a physically or mentally challenged child. Such thoughts, feelings and actions could be adaptive or palliative.
Adaptive or Problem focus coping strategies in the context of this study refers to:
Thoughts, actions or feelings that enable one to deal actively with the cause of his problem through: seeking information, utilizing various support groups (family, spiritual, social) individual resilience, having enough finance to provide appropriate and special gadgets for the child and identifying and assessing special institutions.
Palliative or Emotion Focused coping strategies in the context of this study refers to:  Thoughts, actions or feelings to denial the existence of the problem situation.      
–           Individual resilience in the context of this study refers to: attributes or traits possesses by individuals that help him or her to cope with the care of a mentally or physically challenged child. These include; patience, being emotionally stable, positive self concept or believing in oneself, better income, and education.
–           Family support in the context of this study refers to:  Support from family members such as, rendering financial assistance and gift, counseling and spiritual guidance.
–           Spiritual support in the context of this study refers to:  Support resulting from ones faith in God. These in includes, prayers, reading the bible, participating actively in the church activities, hoping and trusting in God.
–           Social Support in the context of this study refers to: Support such as (money, gift, advice, and information) from various community groups (friends, co-workers, church members, social clubs, neighbors, agencies and institutions).
 
Physically challenged in the context of this study refers to: disabilities like deafness, dumbness, being crippled, blindness, that limit the individual from functioning on equal level with others.
Mentally challenged in the context of this study refers to: a child who has reached primary school age and above (5-6 years) but lacks the ability to understand simple tasks such as; self care, self direction and basic academic skills (reading, writing and simple arithmetic).
Parents of physically and mentally challenged children in the context of this study refer to: caregivers looking after a mentally or physically challenged child at home such as father, mother, siblings, grandmother, grandfather, house help, cousin, nephew, niece, mother in-law or anybody who have cared for a physically or mentally challenged child at home for at least 4 times a week for not less than 3 months.