“A chronic disease such as Multiple Sclerosis has an impact on every relationship…motor dysfunctions and sexual disabilities as well as mental changes impose serious problems on a relationship.” In clinical practice I have seen families who appear to “cope” better than others when a family member has a diagnosis of Multiple Sclerosis. MUltiple Sclerosis (MS) is a progressive neuromuscular disease with onset in early to mid adulthood. Canada has one of the highest incidents of Multiple Sclerosis in the World. In Canada over 55,000 people have MS and, on average, three more cases are diagnosed each day. Multiple Sclerosis in general is more common in countries like Canada which are further away from the equator. Women are more likely to have Multiple Sclerosis than men in a ratio of three women to one man. Impairments include fatigue, decreased mobility, bowel and bladder problems, visual disturbances, cognitive problems and tremors. Overview of the Double ABC-X Model of Family Crisis The Double ABC-X Model of Family Crisis has been used to explore the relationship of several moderating phenomenon on the crisis event. In this model, a diagnosis of Multiple Sclerosis can be considered a stressor. The resources that the family has in place (human, financial, etc.) influence the impact of that stressor. That stressor is further influenced by the family’s perception of the diagnosis. Often multiple stressors occur at the same time within a family. Multiple stressors may lead to what is termed “pile up”. The impact of this “pile up” is again influenced by the resources available, and the perception of the pile up and the perception of the adequacy of resources. Coping in this model is conceptualized as a combination of direct action (e.g., acquiring resources and learning new skills), intra-psychic action (e.g., reframing the problem), and control of the emotions generated by the stressor (e.g., social support). Adaptation is the final component, but does not necessarily mean a quiet, calm family life. For example where the family member with MS has progressed to the point where caring for them in the home is not possible, successful adaptation may mean finding an appropriate placement for the person with MS. MS stressors and pile up Along with the physical symptoms of Multiple Sclerosis, depression is common. Clients with Multiple Sclerosis have a lifetime risk of depression between 22.8 per cent and 53 per cent. Depression seems to be correlated with the severity of disease. Depression could be the result of the declining functional abilities, related to increased symptoms, or depression could be a symptom of the disease. Regardless of causality, depression can have an impact on the family. One person with MS states, “I find it really hard to talk to my family when I’m depressed. I just like to be alone, and when they say to me: ‘What’s wrong?’ I don’t let them know...” Rates of separation and divorce tend to be higher among clients with Multiple Sclerosis due to the changing balance of the relationship, assuming a caregiving role, sexual dysfunction, cognitive impairment and financial strain. Financial strain does not just refer to increased costs associated with caregiving and purchase of assistive devices. Half of the patients with Multiple Sclerosis are forced to quit their jobs within ten years of diagnosis. In adulthood, the decision of whether or not to have children is a major milestone. Women with Multiple Sclerosis may be concerned with the impact of their diagnosis on their child as well as their ability to cope. Although Multiple Sclerosis is not hereditary, children of clients who have MS, are one to four percent more likely to develop MS than the general population, but this risk is still considered low and should not cause the health care provider to discourage pregnancy. Relapses are more common than average within the first six months of the birth of the child. This means that planning ahead to have extra caregiving and or child care support within the first six months is critical. A diagnosis of Multiple Sclerosis does have an impact on mother and child relationships. In a study of motherchild dyads, mothers noticed changes in physical affection with their children during exacerbations of their MS Mothers of younger children tended to recognize the need for physical affection and tried to maintain this even when they had to push themselves. Interestingly, mothers tended to underestimate their child’s perception of the change. One child in the study commented, “…we have to get this and get that for her. Then she cries and gets mad because she can’t do it. It’s really hard to take when you just want a normal life like everybody else.” One theory for this difference in perception is that mothers with relapsing remitting MS feel themselves get better after an exacerbation, the children however may not fully adapt to the intermittent differences. Existing and new resources Depending on the course of the disease, the family member with MS may require assistance with activities of daily living or other caregiving support. Assistive devices may be seen as one way to decrease the burden of care by increasing the independence of the client. One study found that walkers and canes do tend to increase independence with personal activities of daily living; however they did not tend to increase the independence of the client for instrumental activities (e.g., grocery shopping, going to the bank, etc.), likely due to the complexity of these tasks. For example clients who use a cane can often increase their independence with toileting and dressing, as they can ambulate safely to the washroom, and have increased stability for dressing activities. The prescription of wheelchairs did not have the same impact on independence, likely because these clients have a greater level of disability. For example, the client with Multiple Sclerosis may need a power wheelchair to move around their home environment. However, this mobility does not often result in increased independence in personal activities of daily living due to upper extremity and trunk weakness and poor muscle coordination. This lack of impact on the burden of care can lead to the abandonment of the device. Families provide the bulk of care to those in need and formal care acts as a supplement, rather than a substitute for informal caregiving. The burden of care is perceived to be greater by caregivers with weaker developmental attachment with their parents and those caregivers with multiple roles. These caregivers also tend to provide more help with instrumental tasks rather than emotional ones. Instrumental support (e.g., grocery shopping, house keeping etc.) rather than emotional support tends to be provided, perhaps because pragmatic concerns may seem more pressing. For a family member with MS it is often the spouse who takes on the role of caregiver. For some, asking For help can be difficult. “I had to arrive at the mind-set that it was a crisis we were going through, that it was appropriate to ask for help and that I had the right to do so—the right to gather a support system.” Some of the recommended strategies a caregiver can use to seek assistance from other members of the family include writing letters to extended family asking for specific support, conducting a family meeting and networking. Letter writing can be particularly effective as it gave her the opportunity to tailor requests to the individual extended family members (e.g., requesting support versus physical assistance or financial assistance), and gives the family member a chance to consider their response. Perception of the diagnosis and resources “Individuals’ cognitive appraisals of life events strongly influence their responses, and the nature of such appraisals may be the most important component in determining an individual’s or family’s response to a stressor event.” This perception may be influenced by the developmental stage of the family, their knowledge of the disease process and other factors. The family goes through a number of normal developmental milestones such as learning to live together, parenting, launching children, etc. Depending on the timing of the onset of MS, the family’s perception of the diagnosis may be different. For example, if MS is diagnosed before the couple has children, the diagnosis may influence the decision as to whether or not to have children and thus fundamentally change the make-up of the family. If the diagnosis is made after the children are born, concerns regarding childcare, adapting family activities and physical affection for the children may become the concern. Supports may also be viewed as sources of stress. As one caregiver put it, “we were fed up having different fingers in our cutlery drawer every day.” Level of knowledge may influence perceptions. In a study of mother child dyads, some children were confused by the unpredictability of the mother’s behaviours during exacerbations and did not understand the full extent of their mother’s illness. Coping In the Double ABC-X Model of Family Crisis coping is conceptualized in terms of three types of responses. Taking direct action involves acquiring resources and learning new skills. For families impacted by MS this may involve renovations to make the home more accessible, modifying activities/routines to accommodate fatigue and other symptoms of MS and seeking out additional caregivers. Intra-psychic action involves reframing the problem. For Example, the spouse may feel totally responsible for the caregiving activities. “Jeff might be your husband but he is also his parents’ son, his brother’s brother—and his community’s citizen. Taking care of him is not only your responsibility.” This new perspective may in turn suggest other approaches. The final response is control of the emotions generated by the stressor, such as the availability of social supports. For example, approximately 50 per cent of young adult caregivers report that their morale was low and that they needed more moral support. Adaptation The final component of the model is adaptation, or the degree to which the family system alters to accommodate the impact of the diagnosis of MS. Failure to cope may be better for some families as it can result in a crisis which, in turn, will lead to the family reorganizing into a better functioning system. Discussion Canada has one of the highest rates of Multiple Sclerosis in the world, but Multiple Sclerosis is not a global disease. This highlights the need for health care providers to increase their knowledge of the regional diseases, when they move to a new geographical area. Looking back over my caseload of clients with Multiple Sclerosis, I am struck by the impact this diagnosis has had on the families. The magnitude of the impact does not appear to be correlated to the level of disability, as much as the perception of the client and family. For example, one family continued to have three children after the father was diagnosed with MS. At the time I saw them, the husband was dependent for all activities of daily living, there were three children under the age of six and the wife was happily caring for the family with minimal external support. Another family was focused on the barriers to having the father live at home, despite having nearly full time paid caregivers, and less functional disability. In this case perhaps the cultural background of the family was also an influencing factor. The Double ABC-X Model of Family Crisis has provided me with a structure with which to more closely examine family relationships. Often my practice has focused on the individual with Multiple Sclerosis, with very little attention paid to the impact of this diagnosis on the family. Examining and supporting the family may help health care providers minimize the impact of a diagnosis of MS on the family. Application to other illnesses “According to social systems theory, stress represents a change in the family’s steady state. Stress is the family’s response to the demands family members experience as a result of the stressor event.” The Double ABC-X Model of Family Crisis can be used by the health care provider to examine the impact of this illness on the family. Use of this model identifies the resources and perceptions of the family which may in turn lead to an understanding of the gaps and needs. Addressing these gaps and needs, and fostering coping strategies will help lead to successful adaptation of the family. Conclusion Multiple Sclerosis has been the lens through which the impact of a medical illness on a family has been examined. Generally the identified concepts apply to families coping with other medical illnesses. The Double ABC-X Model of Family Crisis was developed to examine the impact of any type of stress on the family. The impact of any medical illness can be examined using this model. Clearly a medical illness has an impact on the family. Health care providers need to recognize this impact and look for opportunities to support the family as they cope with illness.