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Mothers with chronic illness: A predicament of social construction Sally E. Thorne R.N., M.S.N.
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University of British Columbia , Vancouver Published online: 14 Aug 2009.
To cite this article: Sally E. Thorne R.N., M.S.N. (1990) Mothers with chronic illness: A predicament of social construction, Health Care for Women International, 11:2, 209-221, DOI: 10.1080/07399339009515889 To link to this article: http://dx.doi.org/10.1080/07399339009515889
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MOTHERS WITH CHRONIC ILLNESS: A PREDICAMENT OF SOCIAL CONSTRUCTION Sally E. Thorne, R.N., M.S.N.
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University of British Columbia, Vancouver
In the context of a larger qualitative study, a database including extensive interviews with a subset of sixteen chronically ill mothers was obtained. Secondary analysis revealed that the women's concerns about themselves and their children included issues of performance, availability, dependency, and socialization. Further, these women reported that the health care system seemed incapable of recognizing or accounting for the profound interrelationship between their mothering and their illness. Analysis of these findings in terms of the conflicting social obligations inherent in the roles of "mother" and of "chronically ill person" provides a means by which to understand the women's impressions that it was a contradiction in terms to be both an effective mother and a good patient.
The experience of chronically ill mothers has received surprisingly little attention in the scholarly health care literature. The extensive body of knowledge about chronic illness includes little specific to women (Deegan, 1985), and the expanding volume of women's health literature pays limited attention to the effects of motherhood on women's health (Boulton, 1983). What remains is a smattering of literature on aids and adaptations for pregnancy and childbirth for disabled women (Corbin, 1987; Shaul, Dowling, & Laden, 1985); a body of theoretical analysis on family dynamics when a mother is ill or incapacitated (Kopala & Egenes, 1984; Peters & Esses, 1985; Skipper, Fink, & Hallenbeck, 1968; Tilden & Weinert, 1987; Vargo, 1979); and an assortment of attempts to quantify the effects of a mother's illness on the behavioral and psychological variables in her children (Arnaud, 1959; Braham, Houser, Cline, & Posner, 1975; Romano, 1976). While it is assumed that chronically ill mothers require better supports and services than are commonly available (e.g. Allaire, 1988; Carrick & Bibb, 1982), the experience of raising children when one is chronically ill has not been Health Care for Women International, 11:209-221, 1990 Copyright © 1990 by Hemisphere Publishing Corporation
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the subject of systematic study. Such an inquiry is the subject of this article. METHOD
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Data Set The discussion that follows is derived from secondary analysis of a subset of data gathered for a large qualitative study of health care relationships in chronic illness (Thorne & Robinson, 1989). The original study relied on grounded theory methods to direct data collection and analysis (Chenitz & Swanson, 1986; Glaser & Strauss, 1967; 1970; Hutchinson, 1986; Stern, 1985). Of the 77 informants participating in repeated intensive interviewing for that study, sixteen were mothers with children still at home during the experience with chronic illness. The interviews were guided by an evolving set of questions designed to generate an understanding of the subjective experience of health care relationships in the context of chronic illness. Thus, the accounts included extensive descriptions of what it was like to be chronically ill as well as what it was like to receive professional health care for a chronic illness. Secondary Analysis Initial review of the total data set revealed that the accounts generated from the subset of 16 mothers (amounting to 1,000 pages of verbatim transcripts) contained vivid descriptions of the phenomenon of motherhood in chronic illness. These transcripts were subsequently contentanalyzed using Giorgi's (1975) approach to identifying meaning units within the whole. This secondary analysis produced the conceptualizations that form the basis for this current discussion. Because the original study was not designed to address the variable of motherhood systematically, the following description is not a mutually constructed account in the ordinary sense of qualitative data analysis, but rather a tentative conceptualization formulated in relation to the data set. Informants The 16 informants included 5 women with multiple sclerosis (31%), 4 with rheumatoid arthritis (25%), 4 with inflammatory bowel disease (25%), and 3 with scleroderma (progressive systemic sclerosis; 19%). At the time of the interviews, 11 had intact marriages (69%), 2 had been widowed (13%), and 3 claimed to have been deserted by their husbands (19%). Four of the latter 5 had raised children as single mothers. The
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women had from 1 to 4 children (M = 2.2). Nine (56%) had been ill throughout their years of mothering small children; the other 7 (44%) first became ill when their children were aged 12 or older. Although these informants presented a considerable range of parenting experiences, a common element in their accounts was a conviction that chronic illness and mothering were highly interactive. In fact, I was first alerted to the need for this secondary analysis by the frequency with which the theme of mothering laced their illness and health care accounts.
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THE ACCOUNTS The accounts of the chronically ill mothers included concerns about their role as mothers and about their children as children of chronically ill mothers. These interrelated concerns included four thematic categories: performance, availability, dependency, and socialization issues. In addition, the accounts linked these issues with concerns about the nature of health care that was available to them as chronically ill mothers. Performance Issues The chronically ill mothers articulated the effects of various restrictions on their performance as mothers. Because chronic illness made it difficult or impossible to perform certain instrumental tasks, the women judged their task performance by contrasting it with what they described as "normal" mothering. For example, one wheelchair-bound mother described the impact of her physical limitations on her ability to provide a safe environment: "One time when the kids were out at the pool, something happened. And I forgot! I jumped up to run! Well, of course, I was down flat." Several women also reported difficulties associated with not looking or acting like "normal" mothers. One woman recalled her son asking, "Why aren't you like everybody else?" Another lamented her son's never knowing her as she had been before her illness: "He does not remember when I was walking around like a normal person. He's 15 years old now. I think that's unfair. He just doesn't know me." Fatigue was a problem for all of the women. As one mother described it, "The adrenalin was no longer pumping, and I could no longer rise to anything." For many, fatigue and mobility problems precluded their regular involvement in meal preparation and housework. Furthermore, fatigue and mobility problems prohibited projects like knitting and baking that the women interpreted as symbolic "mothering" activities. In spite of these frustrations, many women were reluctant to seek domestic assistance. As one woman said, "I know that you can get other people to
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do a certain amount, but there's a lot of things nobody else can do but yourself." Thus, they tried to distinguish tasks that could be done by anyone from tasks that were integral to their performance as mothers. While the fatigue of chronic illness forced these women to curtail mothering activities, mothering itself contributed to fatigue. Small children were predictably demanding; however, many of the mothers found dealing with older children equally taxing. As one explained, If the kids brings home some of their own personal traumas, that wears me down a bit more again. Well, there's any number of things that wear anybody down, but I believe they wear me down faster. The chunk they take off is a little bigger. Several mothers found teenagers most demanding in this regard. One woman explained her worry as her children approached their teens: "There are confrontations that happen before these teenaged years that just strip me, right now, of any energy I've got. Any stamina for the next couple of hours, they just get you down to the bottom." Thus all of the women described concerns about their performance as mothers in terms of their physical and activity limitations and in terms of their departures from what they considered to be "normal." Availability Issues Fatigue, combined with the unpredictability of acute episodes, caused these mothers to believe themselves to be less consistently available to their children than other mothers. As one woman explained, "When I'm tired, I have to rest, and that's all there is to it." Another said, I'll maybe have supper started . . . tell the kids, "Well, you'd better finish supper. Sorry, I won't be able to join you tonight." They know that happens. Now they'll be the first ones to say, "That's O.K., Mom, you go and lie down. We'll finish having supper. Shall we bring you some on a tray?" Many of the mothers believed that such inconsistency reflected negatively on their reliability as mothers. As one said, "I had a hard time dealing with that, because I've always been a very dependable kind of person." Others attempted to counteract their physical limitations with a consistent emotional presence: "I still had all the time in the world for the kids—for questions and answers, for communication. That was all great. But to participate, and to be the bouncy energetic person that I was, I couldn't do that." In general, the mothers thought that the inconsistency caused by chronic illness was detrimental to their children: "There seem to be so many temporary and/or artificial influences on
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our life that they need something constant through it. And there is no constant in our life; and that constant would be reassuring to all of us." Another common concern was being available on special occasions. Many mothers reported family birthdays or holidays to which they had been unable to contribute. One single mother described a particularly dramatic occasion on which her bowel had obstructed during her 10year-old daughter's birthday party: So I told [my daughter], "If I tell you to call the ambulance, this is how you do it and this is where they are to take me." Of course she was very upset by this. The birthday party's going on downstairs and I'm upstairs waiting for this obstruction to pass. I'll never forget that night, never. It was awful. However, many mothers recalled occasions in which they had struggled against amazing odds to be present for their children's special times: I was still determined on one hand I wasn't going to ever go out in public and see people but, on the other hand, our son was going to be starting Grade One in September, and I was determined that I was going to be the one who took him into school that first day. Nothing was going to stop me from that special occasion. Finally, many of the women reported a more existential problem with availability. Because chronic illness confronted them with their own mortality, it forced them to consider how their children would fare without them. As one mother commented, "To imagine my babies calling somebody else 'Mom' . . . that was heavy." Another mother told of a night in which she felt so ill she didn't expect to live until morning: I went to bed one night, I'll never forget that night, and I decided that I have to get up and write each of the children a letter, because I know I'm going to die before the night's over. And I thought, you know, they'll not "remember me. Some of them are too young to remember me. And I thought I'd better write and tell each one, you know . . . I don't know. And you know what? I was too tired to get up and do this, and for some reason I got up and functioned the next day. Thus, these women worried about being inconsistently available for their children's daily needs, special events, and permanent care. Dependency Issues The third concern expressed by the mothers was their fear of being overly dependent on their children. One mother recalled, "Sometimes with the kids, when I lie down, I don't have the strength to get my legs
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into the bed, and they just lift my legs up onto the bed." Many of the mothers described their children as willing to help out in any way possible. One claimed that her 6-year-old son knew her diabetic paraphernalia as well as she did: "If I forgot my little 3 c.c. syringe that I needed for the morning for the Heparin, he would know. I'd say, 'I need that small syringe.' He knew exactly the order I kept everything." The mothers also relied on their children for moral support. One woman recalled her son's intervention when she was reluctant to go on home T.P.N. (total parenteral nutrition): He came after school one day, and he said to me "What's really wrong with going on home T.P.N.? And I said "[Son] I can't imagine being around people and having them eat and I'm not going to eat." And he said to me, "I do that all the time. I'm a fussy eater." He said to me, "If this machine is going to make you feel better," he says, "then you do it." I mean it was that clear to him, and he was twelve and a half at the time. In another family, a son inspired his mother to continue in her battle with chronic illness: He said to me, "Mom," he says, "your work isn't done." He said, "You haven't seen my apartment yet." He says, "You've got to come and see my apartment. You've got to come and help raise my children and help play with my children." And he's still single! He's only 19! And he hasn't even got a girlfriend at this point! Because they relied on their children for instrumental and emotional support, many of the mothers worried that their children were becoming too independent too quickly. One woman interpreted it as being "robbed of their childhood." Another used the expression "aggressively independent" to describe her preteens' attitude toward the world. Conversely, many mothers reported that their children's dependence on them was an incentive to cope well with chronic illness. As one woman commented, "My friend . . . said if I didn't have all these problems, I would've fallen apart years ago. She said, 'If you didn't have four kids, you would've been finished years ago.'" Thus, for these mothers, dependence on their children was a necessary consequence of the physical and emotional implications of their illness, but a source of considerable concern. Socialization Issues The fourth category of concerns derived from the mothers' presumptions that their chronic illness had significant implications for the socialization of children. They worried about what children learn from being
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so intimately familiar with ill health. As one commented, "[My son] learned sickness in our home . . . very, very early." Many mothers believed that the omnipresence of illness created strained family communication: "I mean, people who have chronic diseases have them for a long, long time. After a while, I don't care how much somebody loves you, they're going to get tired of hearing you're sick again." Furthermore, many were concerned that their children had become desensitized to the suffering around them. One mother recalled her children using her vacated wheelchair as a coatrack. Another reported her daughter's attitude as, "If you're sick, that's your problem." One woman, who found her adult children to be rather inconsiderate of her needs, attributed this to her insistence during their growing years that they not treat her as an invalid. On the more positive side, many of the mothers believed that chronic illness afforded some advantages to the socialization of their children, such as a heightened capacity for compassion: Since he was two-and-a-half I've been in and out of the hospital, and there's a certain look that comes in his eyes, which kills me, you know. But he has more compassion for anybody who's sick, not just me. He has a lot of feeling for anybody sick. I think he seems to really feel for them. However, several mothers interpreted the requirement for compassion as a burden on children: "Even though they might be angry at me, they can't say, "Gee, you make my life the pits, Mom." They can't and they won't. Thank goodness, sometimes. But sometimes I wish they'd just dump it and get it over with." Whether or not they viewed the difference as positive, the mothers were convinced that having a chronically ill mother made a difference in their children's socialization. As one remarked, "They are different. These kids know about life. I'm not worried one little bit about them going out into this world. They know what's out there, and what to expect." Thus, these women described interrelated concerns about themselves and their children in terms of performance, availability, dependency, and socialization. Although the individual accounts varied according to factors such as the age and number of children, the presence or absence of a supportive partner, and the severity of physical and energy limitations, each woman's story reflected all four areas of concern. Health Care Issues Because these mothers understood that there were complex interrelationships between their chronic illness and their mothering, they as-
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sumed that health care services should be able to accommodate both realities. However, they found that both professionals and services targeted either chronic illness or parenting, but never both. Furthermore, they discovered that it was usually impossible to coordinate assistance from multiple sources, since the mandates and perspectives were inherently contradictory. Health care professionals involved in the management of chronic illness disclosed priorities that were characteristically at odds with those of the mothers. One such discrepancy involved interpretation of the requirements for everyday mothering. For example, one mother recalled being ordered to do exercises every day. She argued, "I can't do exercises. I've got four kids and a husband. I'm so tired. I'm working. I'm vacuuming, dusting, washing dishes, cleaning out the bath tub. How the hell am I going to do exercises?" Another recalled being told that proper illness management would require major changes in her lifestyle: "Well, how much of the baby can you throw out with the bath water? Most of us, in our lives, don't have the luxury of being able to just totally alter our lives!" A second discrepancy lay in understanding what constitutes a crisis for a chronically ill mother: "They will acknowledge a crisis if they can define your crisis as a crisis. If you define it as a crisis, that's not acceptable." In general, the women complained that health care professionals were prone to trivializing the implications of motherhood: "The doctors will not listen to you. It doesn't matter what you say . . . you're just a woman." Conversely, those health care professionals who recognized the parental issues failed to appreciate the implications of chronic illness. One woman, who had consulted health care professionals for guidance in managing behavior problems in her children, was surprised to find that they ignored her illness as a source of stress: "It's almost like you're not a part of this. It's a coincidence that you're their mother." When support for the parenting issues was available, it was often inappropriate. One woman recalled being reassured that her teenagers' acting out was normal. She remarked, "Of course it's normal. That is no consolation, because their normal on top of my abnormal yields disaster!" The women explained these unrealistic appraisals by health care professionals as a product of specialization and fragmentation in health care services. As one explained, "They expect you to be servicing your illness all the time, and not getting on with your life." Furthermore, they discovered that the beliefs and assumptions underlying health care services often created an untenable situation in which they were forced to abandon one half of the problem in order to get assistance for the other. In order to secure the health care services they needed, the women claimed that they had to look and act sick. As one explained, "If
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you're stuck in a wheelchair, sitting there dribbling, they'll believe it, but if you can get up and function at all, nobody believes it." However, the women believed that if they became totally incapable of functioning, if they lost all of their "vestiges of pride," they would then qualify for the health care services they needed. As one woman recalled, "The occasional time that I was able to burst into tears, it was very effective. I'd hate that. I had to reduce myself to it. And it wasn't because I tried to, because I'm not the type to do that willingly, but it worked." Conversely, many of the women feared that if they did not protect their pride and independence, they would lose credibility as mothers. Some feared the actual loss of custody: "The more I rise to this type of thing, the more it is wearing me down. I'm going to wind up in an institution, with my kids taken away from me for somebody else to look after. You know, this is the thoughts I go through." Others worried about losing parental authority, increasing family strain, and being an inappropriate role model for their children. In some instances, the children were also caught in this bind. Their willingness to help out was occasionally used as an excuse to withdraw home support services: "Because I've got terrific kids, the support systems tell me to draw on my kids more. My kids need to do the drawing!" Thus the predicament for these women was that the more they tried to take responsibility for their lives, the more they jeopardized the support and services they needed to succeed in raising their children: "You know, being independent, being strong, eventually works against you. Totally against you." DISCUSSION It has long been argued by social scientists that illnesses must be understood in the context of the social situations in which they emerge, are managed, and have consequences (Alonzo, 1985; Mechanic, 1986). In the case of chronic illness, threats to life and physical well-being occur sporadically and are eclipsed by the more pressing concerns associated with managing daily living (Black, Dornan, & Allegrante, 1986). As is evident from the accounts of the women in this study, chronically ill mothers face a complex set of challenges. The findings suggest that such women perceive themselves to be inadequately and inappropriately assisted with these challenges by the existing health care resources. The contrast between the mothers' perspective and that of their health care professionals is a central theme in their accounts. One interpretation of the counterproductive health care attitudes can be derived from examination of the underlying assumptions associated with "mother" and "illness" as socially constructed roles. The role of mother is shaped by social beliefs that mothers are con-
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stantly available (Held, 1983), totally responsible (Margolis, 1984), and entirely unselfish (Wearing, 1984). One author has termed this role obligation the "legacy of maternal masochism" (Rubin, 1984). In contrast, the chronic illness role includes the requirements to "act normal," to vigilantly monitor one's symptoms, and to accommodate one's life to the illness (Lambert & Lambert, 1987; Strauss, 1981). Clearly the two roles are incompatible. Mothers are not supposed to be ill (Graham, 1984), and those with chronic illness are not supposed to clutter their lives with extraneous family obligations (Carrick & Bibb, 1982). The findings of this preliminary study suggest that these conflicting role expectations are prevalent not only in society at large, but, more disturbingly, among the health care professions. Possibly because blaming the illness on the victim provides a socially acceptable means for reducing discomfort and helplessness, theories of individual responsibility are increasingly popular among health professionals (Stephenson & Murphy, 1986). RECOMMENDATIONS My findings suggest the importance of including introspective and critical thinking skills in health care professional education. Professional accountability ought to be sufficiently comprehensive to include monitoring the impact of the defense mechanisms with which health care professionals manage their anxiety in the face of human misery. A body of theory that articulates and explains some of the more common illogical and inhumane professional misconceptions would be of value in promoting insight and self-evaluation among practicing professionals. In addition, there is an obvious need for research into the interaction between various chronic conditions and life situations to produce knowledge of the predictable consequences for everyday living. Practitioners need to know how to identify those chronically ill mothers most in need of parenting support. Furthermore, they need strategies to guide their intervention on behalf of chronically ill mothers whose parenting obligations place them in conflict with treatment regimes. In the broader sense, these findings suggest a tremendous need for more enlightened and coordinated community health care services. The medicalizatipn of health care and the resultant fragmentation of services have been identified as a primary source of the type of problem identified by the women in this study (Conrad & Schneider, 1981). Because chronic illness is experienced within the domain of daily living, it has been argued that physicians are less effectively prepared to counsel chronically ill patients than are other health care professionals, such as nurses (Black et al., 1986; Bradley & Burish, 1983; Fox, 1981).
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The relative prominence of chronic illness requires that new models be devised to guide health care professionals in the provision of appropriate and relevant services (Rolland, 1987; Weiner, Fagerhaugh, Strauss & Suczek, 1984). The narrow focus characteristic of the traditional acute biomédical illness model seems ineffective and, at times, even counterproductive (Capra, 1982; Cohen, 1987). Furthermore, the client's perspective on services required has been absent from the equation for too long (Fitzpatrick, 1984; Nerenz & Leventhal, 1983). One solution may include the development of interdisciplinary, nonhierarchical health care teams for which continuity, flexibility, and adaptation to changing conditions and circumstances are hallmarks. Because nurses focus on the individual who is ill and his or her family, and because they rely on comprehensive and systematic models to direct defensible decisions on behalf of that person, the nursing profession may be ideally suited for leadership roles in such collaborative teams. Health care professionals working with chronically ill mothers must appreciate the compromises and conflicts that the two life experiences create. They must look beyond the implications of the disease and attempt to understand the person living with it if they are to negotiate the best intervention for each individual. Furthermore, they need to advocate health service delivery systems that are more responsive to the actual needs of clients than to the quantifiable measures of disease progress.
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Nerenz, D. R., & Leventhal, H. (1983). Self-regulation theory in chronic illness. In L. A. Bradley & T. G. Burish (Eds.), Coping with chronic disease: Research and application (pp. 13-37). New York: Academic Press. Peters, L. C. & Esses, L. M. (1985). Family environment as perceived by children with a chronically ill parent. Journal of Chronic Diseases, 38(4), 301-308. Rolland, J. S. (1987). Chronic illness and the life cycle: A conceptual framework. Family Process, 26, 203-221. Romano, M. D. (1976). Preparing children for parental disability. Social Work in Health Care, 7(3), 309-315. Rubin, N. (1984). The mother mirror: How a generation of women is changing motherhood in America. New York: Putnam. Shaul, S., Dowling, P. J., & Laden, B. F. (1985). Like other women: Perspectives of mothers with physical disabilities. In M. J. Deegan & N. A. Brooks (Eds.), Women and disability: The double handicap (pp. 133-142). New Brunswick, New Jersey: Transaction Books. Skipper, J. K., Fink, S. L., & Hallenbeck, P. N. (1968). Physical disability among married women: Problems in the husband-wife relationship. Journal of Rehabilitation, 34, 16-19. Stephenson, J. S., & Murphy, D. (1986). Existential grief: The special case of the chronically ill and disabled. Death Studies, 10(2), 135-145. Stern, P. N. (1985). Using grounded theory method in nursing research. In M. M. Leininger (Ed.), Qualitative research methods in nursing (pp. 149-160). Orlando, FL: Grune & Stratton. Strauss, A. (1981). Chronic illness. In P. Conrad & R. Kern (Eds.), The sociology of health and illness: Critical perspectives (pp. 138-149). New York: St. Martin's Press. Thorne, S. E., & Robinson, C. A. (1989). Guarded alliance: Health care relationships in chronic illness. Image: The Journal of Nursing Scholarship, 27(3), 153-157. Tilden, V. P., & Weinert, C. (1987). Social support and the chronically ill individual. Nursing Clinics of North America, 22(3), 613-620. Vargo, J. W. (1979). The disabled wife and mother: Suggested goals for family counselling. Canadian Counselor, 13, 108-111. Wearing, B. (1984). The ideology of motherhood: A study of Sydney suburban mothers. Sydney: George Allen & Unwin. Weiner, C., Fagerhaugh, S., Strauss, A., & Suczek, B. (1984). What price chronic illness? In A. Strauss (Ed.), Where medicine fails (4th ed., pp. 13-36). New Brunswick, New Jersey: Transaction Books.
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Mothers with chronic illness: A predicament of social construction Sally E. Thorne R.N., M.S.N.
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University of British Columbia , Vancouver Published online: 14 Aug 2009.
To cite this article: Sally E. Thorne R.N., M.S.N. (1990) Mothers with chronic illness: A predicament of social construction, Health Care for Women International, 11:2, 209-221, DOI: 10.1080/07399339009515889 To link to this article: http://dx.doi.org/10.1080/07399339009515889
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MOTHERS WITH CHRONIC ILLNESS: A PREDICAMENT OF SOCIAL CONSTRUCTION Sally E. Thorne, R.N., M.S.N.
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University of British Columbia, Vancouver
In the context of a larger qualitative study, a database including extensive interviews with a subset of sixteen chronically ill mothers was obtained. Secondary analysis revealed that the women's concerns about themselves and their children included issues of performance, availability, dependency, and socialization. Further, these women reported that the health care system seemed incapable of recognizing or accounting for the profound interrelationship between their mothering and their illness. Analysis of these findings in terms of the conflicting social obligations inherent in the roles of "mother" and of "chronically ill person" provides a means by which to understand the women's impressions that it was a contradiction in terms to be both an effective mother and a good patient.
The experience of chronically ill mothers has received surprisingly little attention in the scholarly health care literature. The extensive body of knowledge about chronic illness includes little specific to women (Deegan, 1985), and the expanding volume of women's health literature pays limited attention to the effects of motherhood on women's health (Boulton, 1983). What remains is a smattering of literature on aids and adaptations for pregnancy and childbirth for disabled women (Corbin, 1987; Shaul, Dowling, & Laden, 1985); a body of theoretical analysis on family dynamics when a mother is ill or incapacitated (Kopala & Egenes, 1984; Peters & Esses, 1985; Skipper, Fink, & Hallenbeck, 1968; Tilden & Weinert, 1987; Vargo, 1979); and an assortment of attempts to quantify the effects of a mother's illness on the behavioral and psychological variables in her children (Arnaud, 1959; Braham, Houser, Cline, & Posner, 1975; Romano, 1976). While it is assumed that chronically ill mothers require better supports and services than are commonly available (e.g. Allaire, 1988; Carrick & Bibb, 1982), the experience of raising children when one is chronically ill has not been Health Care for Women International, 11:209-221, 1990 Copyright © 1990 by Hemisphere Publishing Corporation
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the subject of systematic study. Such an inquiry is the subject of this article. METHOD
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Data Set The discussion that follows is derived from secondary analysis of a subset of data gathered for a large qualitative study of health care relationships in chronic illness (Thorne & Robinson, 1989). The original study relied on grounded theory methods to direct data collection and analysis (Chenitz & Swanson, 1986; Glaser & Strauss, 1967; 1970; Hutchinson, 1986; Stern, 1985). Of the 77 informants participating in repeated intensive interviewing for that study, sixteen were mothers with children still at home during the experience with chronic illness. The interviews were guided by an evolving set of questions designed to generate an understanding of the subjective experience of health care relationships in the context of chronic illness. Thus, the accounts included extensive descriptions of what it was like to be chronically ill as well as what it was like to receive professional health care for a chronic illness. Secondary Analysis Initial review of the total data set revealed that the accounts generated from the subset of 16 mothers (amounting to 1,000 pages of verbatim transcripts) contained vivid descriptions of the phenomenon of motherhood in chronic illness. These transcripts were subsequently contentanalyzed using Giorgi's (1975) approach to identifying meaning units within the whole. This secondary analysis produced the conceptualizations that form the basis for this current discussion. Because the original study was not designed to address the variable of motherhood systematically, the following description is not a mutually constructed account in the ordinary sense of qualitative data analysis, but rather a tentative conceptualization formulated in relation to the data set. Informants The 16 informants included 5 women with multiple sclerosis (31%), 4 with rheumatoid arthritis (25%), 4 with inflammatory bowel disease (25%), and 3 with scleroderma (progressive systemic sclerosis; 19%). At the time of the interviews, 11 had intact marriages (69%), 2 had been widowed (13%), and 3 claimed to have been deserted by their husbands (19%). Four of the latter 5 had raised children as single mothers. The
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women had from 1 to 4 children (M = 2.2). Nine (56%) had been ill throughout their years of mothering small children; the other 7 (44%) first became ill when their children were aged 12 or older. Although these informants presented a considerable range of parenting experiences, a common element in their accounts was a conviction that chronic illness and mothering were highly interactive. In fact, I was first alerted to the need for this secondary analysis by the frequency with which the theme of mothering laced their illness and health care accounts.
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THE ACCOUNTS The accounts of the chronically ill mothers included concerns about their role as mothers and about their children as children of chronically ill mothers. These interrelated concerns included four thematic categories: performance, availability, dependency, and socialization issues. In addition, the accounts linked these issues with concerns about the nature of health care that was available to them as chronically ill mothers. Performance Issues The chronically ill mothers articulated the effects of various restrictions on their performance as mothers. Because chronic illness made it difficult or impossible to perform certain instrumental tasks, the women judged their task performance by contrasting it with what they described as "normal" mothering. For example, one wheelchair-bound mother described the impact of her physical limitations on her ability to provide a safe environment: "One time when the kids were out at the pool, something happened. And I forgot! I jumped up to run! Well, of course, I was down flat." Several women also reported difficulties associated with not looking or acting like "normal" mothers. One woman recalled her son asking, "Why aren't you like everybody else?" Another lamented her son's never knowing her as she had been before her illness: "He does not remember when I was walking around like a normal person. He's 15 years old now. I think that's unfair. He just doesn't know me." Fatigue was a problem for all of the women. As one mother described it, "The adrenalin was no longer pumping, and I could no longer rise to anything." For many, fatigue and mobility problems precluded their regular involvement in meal preparation and housework. Furthermore, fatigue and mobility problems prohibited projects like knitting and baking that the women interpreted as symbolic "mothering" activities. In spite of these frustrations, many women were reluctant to seek domestic assistance. As one woman said, "I know that you can get other people to
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do a certain amount, but there's a lot of things nobody else can do but yourself." Thus, they tried to distinguish tasks that could be done by anyone from tasks that were integral to their performance as mothers. While the fatigue of chronic illness forced these women to curtail mothering activities, mothering itself contributed to fatigue. Small children were predictably demanding; however, many of the mothers found dealing with older children equally taxing. As one explained, If the kids brings home some of their own personal traumas, that wears me down a bit more again. Well, there's any number of things that wear anybody down, but I believe they wear me down faster. The chunk they take off is a little bigger. Several mothers found teenagers most demanding in this regard. One woman explained her worry as her children approached their teens: "There are confrontations that happen before these teenaged years that just strip me, right now, of any energy I've got. Any stamina for the next couple of hours, they just get you down to the bottom." Thus all of the women described concerns about their performance as mothers in terms of their physical and activity limitations and in terms of their departures from what they considered to be "normal." Availability Issues Fatigue, combined with the unpredictability of acute episodes, caused these mothers to believe themselves to be less consistently available to their children than other mothers. As one woman explained, "When I'm tired, I have to rest, and that's all there is to it." Another said, I'll maybe have supper started . . . tell the kids, "Well, you'd better finish supper. Sorry, I won't be able to join you tonight." They know that happens. Now they'll be the first ones to say, "That's O.K., Mom, you go and lie down. We'll finish having supper. Shall we bring you some on a tray?" Many of the mothers believed that such inconsistency reflected negatively on their reliability as mothers. As one said, "I had a hard time dealing with that, because I've always been a very dependable kind of person." Others attempted to counteract their physical limitations with a consistent emotional presence: "I still had all the time in the world for the kids—for questions and answers, for communication. That was all great. But to participate, and to be the bouncy energetic person that I was, I couldn't do that." In general, the mothers thought that the inconsistency caused by chronic illness was detrimental to their children: "There seem to be so many temporary and/or artificial influences on
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our life that they need something constant through it. And there is no constant in our life; and that constant would be reassuring to all of us." Another common concern was being available on special occasions. Many mothers reported family birthdays or holidays to which they had been unable to contribute. One single mother described a particularly dramatic occasion on which her bowel had obstructed during her 10year-old daughter's birthday party: So I told [my daughter], "If I tell you to call the ambulance, this is how you do it and this is where they are to take me." Of course she was very upset by this. The birthday party's going on downstairs and I'm upstairs waiting for this obstruction to pass. I'll never forget that night, never. It was awful. However, many mothers recalled occasions in which they had struggled against amazing odds to be present for their children's special times: I was still determined on one hand I wasn't going to ever go out in public and see people but, on the other hand, our son was going to be starting Grade One in September, and I was determined that I was going to be the one who took him into school that first day. Nothing was going to stop me from that special occasion. Finally, many of the women reported a more existential problem with availability. Because chronic illness confronted them with their own mortality, it forced them to consider how their children would fare without them. As one mother commented, "To imagine my babies calling somebody else 'Mom' . . . that was heavy." Another mother told of a night in which she felt so ill she didn't expect to live until morning: I went to bed one night, I'll never forget that night, and I decided that I have to get up and write each of the children a letter, because I know I'm going to die before the night's over. And I thought, you know, they'll not "remember me. Some of them are too young to remember me. And I thought I'd better write and tell each one, you know . . . I don't know. And you know what? I was too tired to get up and do this, and for some reason I got up and functioned the next day. Thus, these women worried about being inconsistently available for their children's daily needs, special events, and permanent care. Dependency Issues The third concern expressed by the mothers was their fear of being overly dependent on their children. One mother recalled, "Sometimes with the kids, when I lie down, I don't have the strength to get my legs
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into the bed, and they just lift my legs up onto the bed." Many of the mothers described their children as willing to help out in any way possible. One claimed that her 6-year-old son knew her diabetic paraphernalia as well as she did: "If I forgot my little 3 c.c. syringe that I needed for the morning for the Heparin, he would know. I'd say, 'I need that small syringe.' He knew exactly the order I kept everything." The mothers also relied on their children for moral support. One woman recalled her son's intervention when she was reluctant to go on home T.P.N. (total parenteral nutrition): He came after school one day, and he said to me "What's really wrong with going on home T.P.N.? And I said "[Son] I can't imagine being around people and having them eat and I'm not going to eat." And he said to me, "I do that all the time. I'm a fussy eater." He said to me, "If this machine is going to make you feel better," he says, "then you do it." I mean it was that clear to him, and he was twelve and a half at the time. In another family, a son inspired his mother to continue in her battle with chronic illness: He said to me, "Mom," he says, "your work isn't done." He said, "You haven't seen my apartment yet." He says, "You've got to come and see my apartment. You've got to come and help raise my children and help play with my children." And he's still single! He's only 19! And he hasn't even got a girlfriend at this point! Because they relied on their children for instrumental and emotional support, many of the mothers worried that their children were becoming too independent too quickly. One woman interpreted it as being "robbed of their childhood." Another used the expression "aggressively independent" to describe her preteens' attitude toward the world. Conversely, many mothers reported that their children's dependence on them was an incentive to cope well with chronic illness. As one woman commented, "My friend . . . said if I didn't have all these problems, I would've fallen apart years ago. She said, 'If you didn't have four kids, you would've been finished years ago.'" Thus, for these mothers, dependence on their children was a necessary consequence of the physical and emotional implications of their illness, but a source of considerable concern. Socialization Issues The fourth category of concerns derived from the mothers' presumptions that their chronic illness had significant implications for the socialization of children. They worried about what children learn from being
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so intimately familiar with ill health. As one commented, "[My son] learned sickness in our home . . . very, very early." Many mothers believed that the omnipresence of illness created strained family communication: "I mean, people who have chronic diseases have them for a long, long time. After a while, I don't care how much somebody loves you, they're going to get tired of hearing you're sick again." Furthermore, many were concerned that their children had become desensitized to the suffering around them. One mother recalled her children using her vacated wheelchair as a coatrack. Another reported her daughter's attitude as, "If you're sick, that's your problem." One woman, who found her adult children to be rather inconsiderate of her needs, attributed this to her insistence during their growing years that they not treat her as an invalid. On the more positive side, many of the mothers believed that chronic illness afforded some advantages to the socialization of their children, such as a heightened capacity for compassion: Since he was two-and-a-half I've been in and out of the hospital, and there's a certain look that comes in his eyes, which kills me, you know. But he has more compassion for anybody who's sick, not just me. He has a lot of feeling for anybody sick. I think he seems to really feel for them. However, several mothers interpreted the requirement for compassion as a burden on children: "Even though they might be angry at me, they can't say, "Gee, you make my life the pits, Mom." They can't and they won't. Thank goodness, sometimes. But sometimes I wish they'd just dump it and get it over with." Whether or not they viewed the difference as positive, the mothers were convinced that having a chronically ill mother made a difference in their children's socialization. As one remarked, "They are different. These kids know about life. I'm not worried one little bit about them going out into this world. They know what's out there, and what to expect." Thus, these women described interrelated concerns about themselves and their children in terms of performance, availability, dependency, and socialization. Although the individual accounts varied according to factors such as the age and number of children, the presence or absence of a supportive partner, and the severity of physical and energy limitations, each woman's story reflected all four areas of concern. Health Care Issues Because these mothers understood that there were complex interrelationships between their chronic illness and their mothering, they as-
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sumed that health care services should be able to accommodate both realities. However, they found that both professionals and services targeted either chronic illness or parenting, but never both. Furthermore, they discovered that it was usually impossible to coordinate assistance from multiple sources, since the mandates and perspectives were inherently contradictory. Health care professionals involved in the management of chronic illness disclosed priorities that were characteristically at odds with those of the mothers. One such discrepancy involved interpretation of the requirements for everyday mothering. For example, one mother recalled being ordered to do exercises every day. She argued, "I can't do exercises. I've got four kids and a husband. I'm so tired. I'm working. I'm vacuuming, dusting, washing dishes, cleaning out the bath tub. How the hell am I going to do exercises?" Another recalled being told that proper illness management would require major changes in her lifestyle: "Well, how much of the baby can you throw out with the bath water? Most of us, in our lives, don't have the luxury of being able to just totally alter our lives!" A second discrepancy lay in understanding what constitutes a crisis for a chronically ill mother: "They will acknowledge a crisis if they can define your crisis as a crisis. If you define it as a crisis, that's not acceptable." In general, the women complained that health care professionals were prone to trivializing the implications of motherhood: "The doctors will not listen to you. It doesn't matter what you say . . . you're just a woman." Conversely, those health care professionals who recognized the parental issues failed to appreciate the implications of chronic illness. One woman, who had consulted health care professionals for guidance in managing behavior problems in her children, was surprised to find that they ignored her illness as a source of stress: "It's almost like you're not a part of this. It's a coincidence that you're their mother." When support for the parenting issues was available, it was often inappropriate. One woman recalled being reassured that her teenagers' acting out was normal. She remarked, "Of course it's normal. That is no consolation, because their normal on top of my abnormal yields disaster!" The women explained these unrealistic appraisals by health care professionals as a product of specialization and fragmentation in health care services. As one explained, "They expect you to be servicing your illness all the time, and not getting on with your life." Furthermore, they discovered that the beliefs and assumptions underlying health care services often created an untenable situation in which they were forced to abandon one half of the problem in order to get assistance for the other. In order to secure the health care services they needed, the women claimed that they had to look and act sick. As one explained, "If
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you're stuck in a wheelchair, sitting there dribbling, they'll believe it, but if you can get up and function at all, nobody believes it." However, the women believed that if they became totally incapable of functioning, if they lost all of their "vestiges of pride," they would then qualify for the health care services they needed. As one woman recalled, "The occasional time that I was able to burst into tears, it was very effective. I'd hate that. I had to reduce myself to it. And it wasn't because I tried to, because I'm not the type to do that willingly, but it worked." Conversely, many of the women feared that if they did not protect their pride and independence, they would lose credibility as mothers. Some feared the actual loss of custody: "The more I rise to this type of thing, the more it is wearing me down. I'm going to wind up in an institution, with my kids taken away from me for somebody else to look after. You know, this is the thoughts I go through." Others worried about losing parental authority, increasing family strain, and being an inappropriate role model for their children. In some instances, the children were also caught in this bind. Their willingness to help out was occasionally used as an excuse to withdraw home support services: "Because I've got terrific kids, the support systems tell me to draw on my kids more. My kids need to do the drawing!" Thus the predicament for these women was that the more they tried to take responsibility for their lives, the more they jeopardized the support and services they needed to succeed in raising their children: "You know, being independent, being strong, eventually works against you. Totally against you." DISCUSSION It has long been argued by social scientists that illnesses must be understood in the context of the social situations in which they emerge, are managed, and have consequences (Alonzo, 1985; Mechanic, 1986). In the case of chronic illness, threats to life and physical well-being occur sporadically and are eclipsed by the more pressing concerns associated with managing daily living (Black, Dornan, & Allegrante, 1986). As is evident from the accounts of the women in this study, chronically ill mothers face a complex set of challenges. The findings suggest that such women perceive themselves to be inadequately and inappropriately assisted with these challenges by the existing health care resources. The contrast between the mothers' perspective and that of their health care professionals is a central theme in their accounts. One interpretation of the counterproductive health care attitudes can be derived from examination of the underlying assumptions associated with "mother" and "illness" as socially constructed roles. The role of mother is shaped by social beliefs that mothers are con-
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stantly available (Held, 1983), totally responsible (Margolis, 1984), and entirely unselfish (Wearing, 1984). One author has termed this role obligation the "legacy of maternal masochism" (Rubin, 1984). In contrast, the chronic illness role includes the requirements to "act normal," to vigilantly monitor one's symptoms, and to accommodate one's life to the illness (Lambert & Lambert, 1987; Strauss, 1981). Clearly the two roles are incompatible. Mothers are not supposed to be ill (Graham, 1984), and those with chronic illness are not supposed to clutter their lives with extraneous family obligations (Carrick & Bibb, 1982). The findings of this preliminary study suggest that these conflicting role expectations are prevalent not only in society at large, but, more disturbingly, among the health care professions. Possibly because blaming the illness on the victim provides a socially acceptable means for reducing discomfort and helplessness, theories of individual responsibility are increasingly popular among health professionals (Stephenson & Murphy, 1986). RECOMMENDATIONS My findings suggest the importance of including introspective and critical thinking skills in health care professional education. Professional accountability ought to be sufficiently comprehensive to include monitoring the impact of the defense mechanisms with which health care professionals manage their anxiety in the face of human misery. A body of theory that articulates and explains some of the more common illogical and inhumane professional misconceptions would be of value in promoting insight and self-evaluation among practicing professionals. In addition, there is an obvious need for research into the interaction between various chronic conditions and life situations to produce knowledge of the predictable consequences for everyday living. Practitioners need to know how to identify those chronically ill mothers most in need of parenting support. Furthermore, they need strategies to guide their intervention on behalf of chronically ill mothers whose parenting obligations place them in conflict with treatment regimes. In the broader sense, these findings suggest a tremendous need for more enlightened and coordinated community health care services. The medicalizatipn of health care and the resultant fragmentation of services have been identified as a primary source of the type of problem identified by the women in this study (Conrad & Schneider, 1981). Because chronic illness is experienced within the domain of daily living, it has been argued that physicians are less effectively prepared to counsel chronically ill patients than are other health care professionals, such as nurses (Black et al., 1986; Bradley & Burish, 1983; Fox, 1981).
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The relative prominence of chronic illness requires that new models be devised to guide health care professionals in the provision of appropriate and relevant services (Rolland, 1987; Weiner, Fagerhaugh, Strauss & Suczek, 1984). The narrow focus characteristic of the traditional acute biomédical illness model seems ineffective and, at times, even counterproductive (Capra, 1982; Cohen, 1987). Furthermore, the client's perspective on services required has been absent from the equation for too long (Fitzpatrick, 1984; Nerenz & Leventhal, 1983). One solution may include the development of interdisciplinary, nonhierarchical health care teams for which continuity, flexibility, and adaptation to changing conditions and circumstances are hallmarks. Because nurses focus on the individual who is ill and his or her family, and because they rely on comprehensive and systematic models to direct defensible decisions on behalf of that person, the nursing profession may be ideally suited for leadership roles in such collaborative teams. Health care professionals working with chronically ill mothers must appreciate the compromises and conflicts that the two life experiences create. They must look beyond the implications of the disease and attempt to understand the person living with it if they are to negotiate the best intervention for each individual. Furthermore, they need to advocate health service delivery systems that are more responsive to the actual needs of clients than to the quantifiable measures of disease progress.
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