DISABILITY AND FAMILY STRESSORS
Dr. Nasir Sulman
Department of Special Education
University of Karachi
Literature on life stress indicates that among many potential threatening events and life circumstances, those characterized by their magnitude, intensity, duration, and unpredictability tend to constitute the most stressful situations. The conditions associated with parenting a disabled child appear to provide all the characteristics to produce life stress.
Conceptualization of Stress
Four different conceptualizations or definitions of stress can be distinguished; each with its own body of literature, and each have been applied to families of children with disabilities. First, in one of the earliest theories (Selye, 1980), stress is understood as the physiological and psychological reactions that an organism goes through, usually in stages, to adapt to a stressful situation. Although not universally accepted by parents or professionals, this definition has been quite widely applied clinically with families of children with disabilities in terms of “grieving models” in which parents go through stages of shock, denial, anger, bargaining, working though and acceptance.
A second conceptualization of stress is referred to as the “stressful life events” paradigm. This paradigm suggests that stressful life events have a negative impact on mental and physical health. This model has been extensively researched in many health areas and, generally speaking, the relationship between any particular stressful event (e.g., loss of job) and any particular outcome (e.g., depression) is weak because there are many intervening variables (e.g., what social supports the person has, what the job loss “means” to them, what coping strategies they use, and so on). In the case of families of a child with disabilities, it is evident from research and clinical practice that there is tremendous heterogeneity among families, with some coping very well and articulating positive effects, while others report significant stress and strain.
A third approach to conceptualizing stress is the “daily hassles” paradigm, which suggests that it is not necessarily a major life event that is stressful but all the everyday frustrations and hassles associated with it. In the case of families of children with disabilities, this theory has been used extensively. It leads to the assumption that it is not the single life event of having a child with disabilities that is stressful but, rather, the cumulative effect of smaller day-to-day annoyances and hassles associated with caretaking (e.g., changing diapers on a big child, taking the child to various appointments, etc.).
A fourth definition of stress involves the concept of a “resource imbalance” between the demands of a situation (stressors) and a person’s resources or coping ability. In the case of families of children with disabilities, this approach implies that stress is not simply a function of child characteristics (stressors). It is more than a single stressful life event or even a series of daily hassles. It depends to a large extent on the individual parent’s coping abilities, the resources in the family, and the supports the family receives from others. Furthermore, certain factors discussed below such as coping, social support, and so on, may act as buffers or protective factors, moderating negative outcomes.
Sources of Stress and Their Implications
The sources of family stress caused by disability are many, and vary depending on the severity of the behaviors. They are experienced quite differently from family to family, and by parents and siblings. The following is a literature review on sources of stress and their implications, as we understand them today.
The sources of stress, per current literature, are extensive, but may be grouped into major categories, not considering the minor stressors which make up the category. The implications of the stressors upon family life may be falling short in detail, again leaving the reader without a reasonable understanding of what implications are caused by the stressor. For example, Piven, Chase, Landa, & Wzorek (1991) report that parenting a child with disability has detrimental effects on marital relations. Fishman and Wolf (1991) talk about the lack of intimacy. Detrimental effects on marital relations could range from divorce, with one spouse completely separating themselves from the family, to arguments on who gets up with the child on sleepless nights. Also left out may be the pileup, and escalation of stressors that can result in separation (mentally or physically), or divorce. Non-descriptive, quantitative reports are the rule rather than the exception. The following discussion will provide detailed data on the stressors these families experience, and the effect of stressor pile-up on family life.
Coping Strategies and Resources
Resources, as defined by Webster, are things such as money, support, relief, stratagem, and means that lie ready for use or can be drawn upon for aid. Coping, as defined by Lazarus and Folkman (1984), are constantly changing cognitive and behavioral efforts to manage internal and/or external demands that are appraised as taxing or exceeding the individual’s resources. All families are individual systems with differing compositions, values, and ambitions. All families are characterized by idiosyncratic strengths, resources, and coping abilities. Disability, however, is such a distinctive and difficult condition that some generalities can be derived.
Family Competence and Confidence
Children with disability do well when their families acquire skills and knowledge along with the confidence that they can use these competencies to solve problems, and create desirable and productive environments for their child’s development. As families do well so does their disabled child. Because families are often their disabled child’s lifelong and most influential resource, there is nobody more important than the family in shaping the child’s life and, thus, nobody who is better able to utilize relevant competencies on the child’s behalf. Among the competencies to consider are interactional skills, including those used in instruction, behavioral support, and the development of functional communication and language? Problem solving skills and knowledge of functional assessment are similarly valuable. Having the skills needed to interact pleasantly, productively, and to solve problems successfully is crucial not only among family members but also because there is an ongoing need for families to share these skills with other caregivers, teachers, friends, and support providers. In the researchers’ opinion, further inquiry is needed to uncover what problem solving skills parents with a disabled child use.
Possessing the skills to promote the development of one’s child is important, but insufficient. It is also necessary to be familiar with the services that are available and to know how they can be accessed. Families must know where to find information about services and how to act as advocates for the disabled child and family. Families that include children with disabilities who are doing well are usually adept at interacting with the system, forming useful affiliations, and making use of those resources that fit within a well conceived support plan. Reducing the child’s behavior problems and teaching more independent living skills to the child, either directly or indirectly via parent training and/or training in self-management holds the potential for reducing stress for the parents and the family as a whole. Parent and sibling training need to begin early and continue throughout the different phases of the disabled child’s life to minimize negative family impact.
Support Groups, Respite Care, and Financial Matters
Participation in a support group would allow association with other parents of disabled children and foster cooperative efforts directed toward development of needed family programs.
Relief from the constant demands of a child with disability, or respite care, is essential to the physical, and emotional well being of parents. Respite care allows parents time away from the demands of their child to pursue recreational, cultural, and intellectual interests. Respite can come in the form of formal or informal care. Informal care is usually provided by friends and family, whereas formal care is that which is paid for, usually by a social agency.
Financial planning for the years beyond which the disabled child is at home must begin early. Such a youngster need not remain at home forever and be considered a burden to the family. His or her capacities need to be developed through education and behavior training to allow the fullest life possible. Specialized education and/or training can be extremely expensive and may require long-term financial resources throughout adulthood. Proper financial planning should be in place long before they are needed.
Spousal Support and Family-Based Intervention
Parental sharing in the rearing of a disabled child will reduce stress for both parents. The literature review suggested that the parenting burdens are not shared equally between mother and father, with mothers assuming most of the responsibility. Konstantareas (1989) reports the types of support sought, by mothers of disabled children, from their spouses. Mothers wished from their spouses: (a) to provide them with some relief from caring for the disabled child; (b) to assume more responsibility in disciplining; and (c) to have husbands helping spontaneously with daily chores and responsibilities rather than having to be asked.
The need for family-based intervention programs specifically tailored to suit the psychological or physical nature of the child’s disorder. Intervention programs for the families of disabled children not only should help to deal with the despair, shame, and isolation that may be experienced, but they also could lobby for an increased understanding by the general public in the form of educational programs or the distribution of educational materials.
Normality, Habituation, and Action
The emphasis here appears to be on living as normal a life as possible while avoiding those individuals who will not cooperate in negotiating a definition of the situation as normal. In addition, parents are also concerned with avoiding excessive involvement with organizations that service the needs of the disabled so as to avoid over identification as a family with a disability. Most families use a strategy of selective disclosure. In this strategy the presence of the disorder is only disclosed to those who are sympathetic, to those who may need to know, and to those who are likely to find out anyway.
One of the basic coping strategies for parents of a disabled child is simple habituating or becoming accustomed to their behaviors. After a period of time, the abnormal becomes the norm, which makes the behavior easier to overlook. Action is a coping mechanism that allows parents some piece of mind, knowing they are doing all they can for their child, as well as others.
Living with a disabled child can have profound effects on the entire family–parents, siblings, and extended family members. It is a unique shared experience for families and can affect all aspects of family functioning. On the positive side, it can broaden horizons, increase family members’ awareness of their inner strength, enhance family cohesion, and encourage connections to community groups or religious institutions. On the negative side, the time and financial costs, physical and emotional demands, and logistical complexities associated with raising a disabled child can have far-reaching effects as we describe below. The impacts will likely depend on the type of condition and severity, as well as the physical, emotional, and financial wherewithal of the family and the resources that are available.
For parents, having a disabled child may increase stress, take a toll on mental and physical health, make it difficult to find appropriate and affordable child care, and affect decisions about work, education/training, having additional children, and relying on public support. It may be associated with guilt, blame, or reduced self-esteem. It may divert attention from other aspects of family functioning. The out-of-pocket costs of medical care and other services may be enormous. All of these potential effects could have repercussions for the quality of the relationship between the parents, their living arrangements, and future relationships and family structure. Having a disabled child may also affect parents’ allocation of time and financial resources to their healthy and unhealthy children, their parenting practices, their expectations of healthy siblings in terms of achievement, responsibility, and short- and long-term contributions to the household, and the siblings’ health and development. Finally, having a disabled child in the family may affect the contributions of time and financial resources on the part of the child’s grandparents or other extended family members, the relationships of those individuals to the core family, and the financial, physical, and emotional well-being of those family members. All of these potential effects on families have implications for the health and well-being of disabled children.