Mothers in postdivorce families caring for a child with cystic fibrosis

Mothers in Postdivorce Families Caring for a Child With Cystic Fibrosis Lawrence Ganong, PhD Mary Ellen Doty, RN, MSN Debra Gayer, RN, PNP, PhD

This study explored the experiences of mothers of children with cystic fibrosis (CF) in postdivorce family structures. In-depth interviews of mothers were conducted by registered nurses with expertise in CF. Interviews focused on responsibility for care of the CF child within the context of postdivorce families (e.g., extent of nonresidential fathers’ involvement in children’s care, communication between households). Interviews were audiotaped and transcribed verbatim. The constant comparison method was used for analyzing interview data. Marital transitions contributed to the closeness between mothers and children with CF, but they also added to the mothers’ sense of being overwhelmed with responsibilities. It is likely that children and mothers are more at risk for stress-related problems when mothers are overburdened by the demands of caregiving, earning a living, and other responsibilities. © 2003 Elsevier Inc. All rights reserved.

“Everything is messed up because one person can’t do everything.”—Single mother of a child with cystic fibrosis.

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YSTIC FIBROSIS (CF) is one of the most common genetically transmitted chronic diseases; in the United States nearly 1 of every 2,500 white children has CF (Brown & Schwind, 1999). This disease affects the exocrine glands, causing abnormal secretions that lead to many complications. For example, mucous production in the bronchial airways contributes to reduced lung functioning and increased infections, and mucous obstruction of the pancreatic ducts leads to enzyme deficiencies, resulting in poor digestion, malabsorption, and inadequate weight gain. Although advances in the care of patients with CF have led to increases in life expectancy, there is not yet a cure. CF is a disease that requires adherence to an extensive regimen of chest physiotherapy, aerosol treatments, special diets, and medication administrations. Most of the treatment of a child with CF is performed at home rather than in a hospital setting (Abbott & Gee, 1998). Successful manage-

From the University of Missouri—Columbia, Columbia, MO. Address correspondence and reprint requests to Lawrence Ganong, PhD, 313 Sinclair School of Nursing, University of Missouri, Columbia, MO 65211. E-mail: [email protected] © 2003 Elsevier Inc. All rights reserved. 0882-5963/03/1805-0005$30.00/0 doi:10.1053/S0882-5963(03)00105-2 332

ment of the child with CF requires that families be able to adapt their routines to include time-consuming, demanding, and complex treatment regimens. In addition, parents and children may have to make frequent trips to clinics for check-ups and medical assistance, and frequent hospitalizations of the child with CF are common. The major responsibilities for performing daily treatments for children with CF usually fall to mothers (Nagy & Ungerer, 1990). Consequently, almost every aspect of mothers’ lives are affected by caring for their children, monitoring the progression of the disease, and fulfilling routine tasks of daily living (Abbott & Gee, 1998). Regardless of the child’s age and the severity of the disease, CF treatments represent a substantial time demand on mothers and other family members (Van Os, Clark, Turner, & Herbst, 1985), even when children are old enough to do some treatments themselves or when treatments are relatively minor. Given the importance of family behaviors to the treatment of a child with CF, it is not surprising that many researchers have studied family processes (McCubbin, 1989). Some researchers have emphasized the effects of family functioning, particularly parents’ behaviors, on CF treatment management and on health outcomes of CF children (Abbott & Gee, 1998; Patterson, Budd, Goetz, & Warwick, 1993; Thompson, Gustafson, Hamlett, & Spock, 1992), whereas others have studied the Journal of Pediatric Nursing, Vol 18, No 5 (October), 2003

POSTDIVORCE MOTHERS CARING FOR A CF CHILD

effects of having a child with CF on parental or family functioning (Gibson, 1986). All families are challenged by the stressors associated with caring daily for a child with such a demanding chronic illness— emotional and social stressors involve costs for families that effect family dynamics and the interactions between family members and the community. Venter reported that families adapted better when the burdens of the illness were shared among family members and with persons outside the family. Maintaining a sense of family integration and cooperation, accessing social support, and communicating with health care providers and other parents were other coping behaviors of parents (McCubbin, 1989). Despite the emphasis on understanding the family dynamics of children with CF, not all aspects of family life have been widely investigated. For example, parents’ marital status has been relatively ignored as a variable in CF research (exceptions include Barbero, 1995; Czajkowski & Koocher, 1987; McCubbin, 1989; Van Os et al., 1985). Few single parents have been included in research on CF families, and remarried parents usually are categorized with parents in their first marriages. There have been exceptions, but the number of single and remarried parents in studies has been so small that researchers have tended not to draw conclusions about them (McCubbin, 1989). Parents’ marital status is a variable that should be given more attention by researchers because not all children with CF live with both of their parents. It is not clear whether or not divorce is more common among parents of children with chronic or congenital health problems (Mauldon, 1992), but if rates of marital transitions are similar to rates for parents in general, there are many single and remarried mothers of children with CF. In 1996, 28% of all children in the United States lived with an unmarried parent and 17% lived in a household with a stepparent (Fields, 2001). Extrapolating from recent rates of divorce and remarriage, about 30% of U.S. children will live in a stepparent household before they are 18 years old (Bumpass, Raley, & Sweet, 1995). It is important to understand how different types of families handle the demands of a childhood chronic illness such as CF. For instance, there are reasons to expect that single mothers and repartnered mothers in stepfamilies may manage their children’s chronic illnesses in different ways than do mothers who are in their first marriages (Barbero, 1995).

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SINGLE MOTHERS Perhaps the most important characteristic of single mothers as a group is that they are more likely than other parents to be poor (Acock & Demo, 1994). This has a number of implications for caring for a child with CF. Single mothers are more likely to be the primary, if not the sole, source of income for their families. Any demand that pulls them away from earning a living (e.g., clinic visits, staying home with a child) presents a great financial burden on single mothers, especially if they have other children for whom they must provide. Single mothers are often the only adult in their households and thus may feel as if they are always on duty with their CF children. They may be the only person responsible for following the child’s therapeutic regimen, for scheduling and arranging clinic visits, picking up prescriptions, and making decisions about the child’s care. Even if a single mother has back-up support, she still may be the person who is responsible for overseeing the child’s treatment. Even in situations in which the nonresidential father shares legal custody or is otherwise actively involved in the care of the child, single-mother households function differently from first-marriage families (Ahrons & Wallisch, 1987). Coparental communication patterns are likely to be more sporadic, depending on the level of cooperation between parents, as are decision-making relationships with extended family members, and opportunities for conjoint planning regarding children. Time and energy may need to be budgeted, and parental coordination may even be more important because separated parents usually are not in contact as much as married parents are. Little things that may be helpful in caring for a child with CF, such as having help remembering complicated treatment regimens, may be missing for single mothers, or they may have to figure out how to access that type of assistance. REPARTNERED MOTHERS Households in which there is both a parent and a stepparent superficially resemble first-marriage families in that there are two adults in the household. However, stepfamilies generally differ from first-marriage families in ways that may be important when caring for a child with CF. Stepfamilies are structurally more complex than nuclear families (Ganong & Coleman, 1994). For example, in stepfamily households there may be one stepparent or two stepparents, depending on who has children

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from prior relationships; siblings, stepsiblings, and half-siblings; and varying numbers of household residents, such as when children move into or out of the household. The presence of stepparents means that there are often more adults involved in making decisions and providing care for children in stepfamilies than in first-marriage families. This complexity is made more difficult by the ambiguity surrounding the role of stepparent. That is, it is not clear if the role of stepparents should be as substitute parents, friends, acquaintances, or something else (Coleman, Ganong & Fine, 2000). Stepparents have few legal rights regarding their stepchildren, yet they may be one of the primary caretakers of the child (Mason, Fine, & Carnochan, 2001). Financial issues are also different in stepfamilies. Stepparents may be paying for some or all of the care of stepchildren with whom they share a residence, and they also may be paying child support for children from a prior relationship who live elsewhere. Stepchildren may or may not receive economic support from nonresidential parents. The result of this diversity of child support patterns is that in some stepfamilies money may be leaving the household to help support some children, and entering the household in support for other children. The few studies that have focused on stepfamily money management have found that remarried adults manage their money differently than they did in their first marriages, and differently than those who are in first marriages (Coleman & Ganong, 1989). Generally, relationships between stepparents and stepchildren differ from parent-child relationships: stepparents and stepchildren are not as emotionally close as parents and children and stepparents and stepchildren may have more conflicts (Coleman et al., 2000). Moreover, stepparents in general invest fewer of their personal resources in raising stepchildren than parents do in raising their children, and, as a possible consequence, adolescent stepchildren leave home sooner than children in first marriage families (Coleman et al.). Greater structural and interpersonal complexity, more ambiguity regarding roles and relationships, and more emotional distance between stepfamily members may all contribute to differences in how children with chronic illnesses are cared for in stepfamilies compared with other family forms. Unfortunately, there is little research on caregiving of chronically ill stepchildren. In this study we wanted to explore the experiences of mothers of CF children in postdivorce

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family structures. It is not our intention to suggest that the mother’s marital status is the only variable relevant to understanding CF children’s well-being or family management of care, nor is it our intention to suggest that any given type of family represents a homogeneous group. However, given the large body of research showing that the families of single mothers and repartnered mothers function somewhat differently than first-married families, and given the dearth of research on family structure and CF children’s care, we think there is a need for this exploratory study. METHODS This study was a descriptive investigation of the experiences of divorced mothers of children with CF. Semistructured interviews were conducted once with each mother.

Sample The sample was 13 previously married mothers with a child who had CF. Mothers ranged from 32 to 43 years old (M ⫽ 37.2 y). Most were high school graduates; years of education ranged from 11 to 14, with a mean of 13.2. Nine of them were employed at least part time, 1 was a college student, and 3 were not employed outside the home. These mothers had complex marital and relational histories (Table 1). At the time of the interviews, nine mothers were single and four were remarried to a man who was not the biologic father of the child with CF. This simple identification of marital status understates the family transitions experienced by these mothers and their children: three were in second marriages after a divorce and one mother that currently was remarried had cohabited with a man in-between marriages. Of the unmarried mothers, three had repartnered without marrying (two were cohabiting after one divorce, one was cohabiting after three divorces). The others were living without a partner after one or two divorces after the birth of the child with CF. According to the mothers, most of the fathers of the children with CF had remarried (Table 1). These complex marital/relational histories represent multiple family transitions experienced by their children. Family transitions indicate that household members were added or lost owing to either the dissolution of mothers’ relationships/ marriages or the acquisition of new partners/ spouses. The children of these mothers had experienced between one and eight family transitions, with a median of three and a mean of 3.77 transi-

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Table 1. Years in Relationships for Mothers of Children With Cystic Fibrosis Identification M

Mom Mom Mom Mom Mom Mom Mom Mom Mom Mom Mom Mom Mom

1 2 3 4 5 6 7 8 9 10 11 12 13

D

C

7.5* 5† 1†

5 11 2.5

11 5 2§ 10 8 9.5 5† 6 5

6 1 3 1.1 2.5 .5 5 2 .5

R

1 .7

D

C

5 .5‡ 10‡ 4

7 2

12 2 2.5 8‡ 1.5 5 10‡

R

D

C

R

D

Mother’s Status

Father’s Status

12

S S R S, C S R S S, C R S, C S S R

R S R R R R S R R R S R Unknown

1.5

1

.5

.1

.6

10

1

1

1

.2

3

.2

M, marriage; D, divorce; C, cohabitation; R, remarriage, bold type signifies relationship in which the child with CF was born. *Had 2 children from this marriage. †Had been married and divorced before (no children). ‡Acquired stepchildren in this marriage. §Had a child from this marriage. Marriage 1 and remarriage 2 were to CF child’s father.

tions. This does not include transitions in their fathers’ households. The children with CF ranged in age from 5 to 18 years. These mothers had 10 boys and 6 girls with CF (three mothers had two children with CF). In three families CF children had siblings that did not have CF, five families had half-siblings that did not have CF, and two families had stepsiblings as well as half-siblings. One child had stepsiblings only. Other children in these families ranged in age from 2 to 24 years.

Procedure This study was approved by the University’s Institutional Review Board. The names of mothers of CF children were obtained from the records of a university Cystic Fibrosis Center. The mothers were called, the study was described, and they were asked to participate. If they agreed, they were interviewed during the next clinic visit. Mothers were assured that their children’s care would not be affected by anything communicated to the interviewers. They were told they could withdraw from the study at any time without penalty, and they were assured that responses were confidential. Because this was an exploratory study, and because family structure is of primary interest, no attempt was made to select families randomly. The interviews were conducted by two registered nurses who were knowledgeable about CF and who had conducted many interviews with mothers of CF children before this study. Interviews were conducted in a private office in the hospital, and took 2 to 2.5 hours to complete. Interviews were audiotaped and transcribed verbatim. The third au-

thor monitored the interviews for consistency of questioning by listening to the tapes and reading the transcripts.

Interviews Data were collected via in-depth, semistructured interviews. The interviews consisted of questions designed to elicit information about the family and the child with CF, including information regarding care of the child and adherence to the prescribed treatment regimen. In addition, interviewers asked about the well being of the CF child and the mother. Although all mothers were asked a set of core questions, interviewers probed for additional information when warranted, and the mothers were asked questions relevant to their particular family situations, so interviews varied somewhat between participants. Questions pertinent to their family configurations included the extent of the nonresidential fathers’ involvement in the care of the CF child, communications between former spouses, financial decision making related to the child, and the frequency of contact between former spouses. Family Background Information Mothers were asked for information describing themselves and the other members of their household: ages and sex of children, adults’ ages and educational level, mothers’ occupations, the size of the community in which they lived, and who lived with them. A standard family chronology was elicited, including questions about length of marriage(s), residential moves, geographic closeness to extended family members, time since divorce(s), when they remarried (if applicable), and family

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members’ moves in and out of the household. Family histories started with the beginning of the relationship of the CF child’s parents and continued chronologically to the present. A segment of the family history focused on the child with CF (i.e., when the child was diagnosed, the circumstances surrounding that event). Care of the CF Child Mothers were asked to describe a typical day, with specific questions focusing on the children’s treatments. Other issues covered were financial management associated with the child’s care, how often the child went to the clinic, hospitalizations in the past year, difficulties related to medications and therapy, sibling reactions, and help from extended family members and individuals who are not family members.

Data Analyses Data were analyzed by all 3 researchers using the constant comparison method described by Strauss and Corbin. Each researcher read and independently coded the transcripts line by line. Labels for codes came from the concepts found in the data and from the literature. Codes were sorted, compared, and contrasted until no new codes were produced and when all of the data were accounted for by the coded categories. As data analyses and collection progressed, accountability was achieved through ongoing consultations and by maintaining a written step-by-step procedure that described the evolution of codes, categories, and theory. RESULTS These mothers were extremely emotionally close to their children. This is typical for single mothers (Acock & Demo, 1994) and for mothers of chronically ill children (Brown & Schwind, 1999), so it is not surprising that the mothers in this study described themselves as very close to their children. Because of the necessity of a mother’s constant vigilance in the treatment of CF, this extreme closeness should not necessarily be considered a problem. In fact, the mothers talked positively about how much they enjoyed being close to their child. However, accompanying this emotional closeness was a sense of being overwhelmed by their responsibilities as mothers of a child with CF. A pervasive sense of being on demand without respite was extremely stressful to these mothers. Although such feelings are relatively common among mothers of chronically ill children, these

postdivorce mothers perceived themselves to be truly on their own because most of the fathers did not participate in their children’s care. In fact, only two of the fathers were described as being close to the child with CF. Why the fathers were not more involved cannot be answered by this study, although the mothers’ perceptions offer some directions for future research. Although fathers of chronically ill children have not been studied often, there is evidence that they are not as involved in care as are mothers, although they are important to children’s well being (Katz & Krulik, 1999).

Accordion Times: Maternal Closeness and Paternal Distance All but two of the children were diagnosed with CF as infants or toddlers. The parents did not know about CF before diagnosis nor were they aware of any family history of the illness. The mothers were “shocked,” “devastated,” “terrified, absolutely terrified,” and “angry” at the diagnosis, although a couple of mothers described themselves as “relieved” because knowing what was wrong was preferable to the uncertainty with which they had lived. “It was a relief knowing because we were no longer dealing with something we couldn’t trace. . .I can handle anything that I know about.” After the initial wave of thoughts and feelings about the diagnosis, most of the mothers described themselves as “doing what needed to be done” despite their grief and fear. They learned as much as they could about CF and what they needed to do to care for their children. All of them had been the children’s primary caregivers before the diagnosis, and it was just expected, by themselves and their husbands, that they would be the ones to take care of the children’s health-related needs. A few fathers did go to the clinic or hospital with the mothers to learn about CF, but for the most part learning about treatments was left to mothers. According to the mothers, the fathers also were shocked and devastated when the child was diagnosed, but the fathers were seen as being unable to cope. Some men began to withdraw from the children almost immediately. “I don’t think their dad has ever accepted it. When they were diagnosed he didn’t want to talk about it. It was like he was ashamed maybe, I don’t know.” Fathers often withdrew. “He left us as soon as we came home [from the hospital]. . .. He was giving warning signs from the very first that he wasn’t handling it...Your whole life is falling apart, and you don’t know enough to know that you need help.” “I guess looking back he was avoiding

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it...We never really have been able to talk about her condition with him. He can’t take it. I didn’t realize that all those years, but he can’t.” Some fathers questioned whether the child was their offspring.

Stretched to the Breaking Point As fathers gradually distanced themselves from the child, rarely participating in the child’s care, mothers became more and more invested in the child. We cannot determine from the mothers’ perspectives whether fathers were unable to help, did not want to assist, or were not allowed to help by the mothers. However, as the parents struggled in their different ways to cope, the mothers became frustrated with the fathers and it appeared that mothers generally initiated the marital dissolution. For half of the mothers, the lack of help with the child, what one of the mothers referred to as the father’s “irresponsibility as a parent,” was clearly a major factor in deciding to divorce. In some cases marital breakdown occurred rapidly after the child was diagnosed. Other reasons given by mothers for marital dissolution were husbands’ alcoholism, physical abuse, and affairs. At the core of most of these reasons was the fathers’ perceived inability to respond responsibly to the changing realities in their families. Mothers generally thought the financial and emotional strains associated with the child’s condition contributed to the weakening of the marital bond with their husbands. From the mothers’ perspectives the fathers retreated from dealing with their children’s needs in a variety of ways (e.g., alcohol, affairs) and withdrew from their wives’ needs for assistance and support. As one women recounted: We thought that children would help the marriage. . .but when [our son] was born everything really fell apart even more so because of the cystic fibrosis and because of expenses involved. His dad was really devastated. He was wanting a healthy child, and it was real hard for him to deal with the financial pressure and physical pressure, and he was still wanting to party, and at that point there couldn’t be smoke in the house.

Aftermath of Divorce Ironically, divorce left the mothers with even more responsibility for their CF children. It also meant that they grew closer emotionally to their children because they were together even more after divorce. All but one of the mothers had sole physical and legal custody. This means that the children lived with them and that the mothers had

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the sole rights and responsibilities to make decisions about the children. The lone exception was a mother who had sole physical custody and joint legal custody, which meant that she and her former husband shared decision-making responsibilities. Two fathers did not see their children at all, 6 were described as “rarely” seeing their children, two saw the child on alternate weekends, two saw the CF child for a week in the summer, and one had his child every fourth weekend. It is not unusual for a substantial proportion of nonresidential fathers to lose contact gradually with their children over time (Seltzer, 1991). In that sense, these fathers were typical; certainly their patterns of contact were not unusually low for nonresidential fathers. Most divorced fathers purportedly knew nothing or almost nothing about CF. Only one had ever gone to a CF clinic to learn about the disease and how to do the treatments. The comments of one mother are typical: He knows enough to give him his doses of medicine and he may still remember how to pound him, but I kind of doubt it because it was so long ago. The CF letters I get, I was giving them to him after I read them, and when I would see him I would have a couple of them, and say ‘Here. You might want to read over these.’ I talked to him later and would ask what he thought of this or that, you know, and he’d say, ‘I haven’t had a chance to read it.’ Come to find out he never read any of it, so I just quit giving it to him.

It is not unusual for mothers to become the experts on their children’s chronic illnesses (Abbott & Gee, 1998). However, in these postdivorce families the fathers’ lack of knowledge about their children’s health and treatment was exacerbated by the poor communication that transpired between the parents. Only 3 of the couples communicated much at all, and consequently these were the only fathers that knew much about the children’s health problems and CF treatments. In one of these coparental relationships, the mother was content to have the father be involved minimally, although she resented that he had not paid the child support she was owed. However, she was willing to forgo the money in exchange for his absence. In another couple, the mother communicated information about the child to her ex-husband through his new wife: “I tend to deal with his wife because there for awhile I couldn’t talk to him without him being bitter or making some remark, so I chose to go through [his new wife]. If there is a problem I’ll call [her].”

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Only one couple cooperatively parented their child. “He will come over for the evening. I have always extended that to him. He comes to my house and we sit and talk for hours about some things or over the phone we will talk.” This couple shared legal custody and the father regularly took his children into his home. Often, fathers brought the children back to their mothers when the children became ill while visiting them. Consequently, most mothers got little respite from the stressors of having a child with CF even when the child was visiting their father. If anything, visits to fathers evoked more reasons for concern because mothers felt less in control over children’s care during the visits. Perhaps for this reason, most mothers were not concerned about the low level of paternal involvement, even when they knew the children would like more contact with their fathers. Consequently, mothers retained responsibility for children’s treatments even when the children were with their fathers overnight or for several days. For example, one couple resided near each other, so the father brought the child back to the mother every day for treatments. Another couple lived hundreds of miles apart, so the mother went with the child when he stayed with his father in the summers. The lack of communication and poor coparental relationships in general led to dangerous situations for children when they were in their fathers’ care. One child nearly died while visiting his father and stepmother because they did not know the signs of when he was feeling sick. After this incident, the child’s mother was extremely nervous when the child stayed with his father, who lived in another state. She had evidence that treatments were not performed and medicines were not given as prescribed, but her relationship with the father was so poor that this had not been remedied: It is hard to say what time he gets breathing treatments there. It sounds sneaky, but I used to pack all the medicines just exactly enough for 3 meals a day, 2 snacks, and [respiratory medicine] enough for 3 a day and no more. That way I would know if it was given, and I have had to do that just to see, and sometimes they would come back with a lot more medicine than they should have.

In another family, two brothers with CF typically returned from their yearly trip to their father’s house feeling worse: “They usually come back sick. He is a smoker, but he says he doesn’t smoke around them. I think the travel is not good...they don’t come back the same.”

Not all mothers were willing to continue to do the treatments themselves even when the children were with their fathers or to hope that they survived the visits without them. One mother filed a court order that did not allow the child to stay with the father if the child was sick. The only two mothers who did not worry much when their children were with their fathers communicated regularly with the men. In one case, the adolescent girl had a mild case of CF, so it was not hard for her mother to have her visit her father. “I don’t think her health changes after a visit. She is not there long enough to tell. Now she sees him so infrequently and he is not responsible for her treatments.”

Alone and Overwhelmed Although mothers typically are the primary caregivers for chronically ill children, regardless of their marital status, one major difference for postdivorce mothers is the virtual absence of a back-up support system. From the beginning, these mothers solely were responsible for caring for the CF child and overseeing treatments. The only exceptions were one father who did treatments every other weekend when the children were at his house and an older child with CF in another family who sometimes helped her brother with his CF treatments. This does not mean that the mothers had always lacked support and assistance from other people. For example, over half of these mothers had lived with either their mothers or grandmothers after they separated from the fathers of the children with CF. For all of the mothers this was a temporary stop on their way to finding a new place to live and often a job so that they could financially support themselves and their children. Even when they shared a residence with their parents, however, responsibility for children’s treatment fell to the mothers. Their own mothers offered them emotional support and occasional babysitting when they shared a residence, and rarely, former mothers-in-law provided some financial support. As the mothers moved into their own homes, assistance from kin diminished. In part, this was because mothers and children moved farther away from their families of origin so it became more difficult for them to receive help from kin, and in part because the mothers often had repartnered. The need to earn a living and the demands of the CF treatment regimen placed nearly all of the women in severe time binds. For example, one mother said, “I think that we have no time. The

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biggest thing is no time to do anything. It is like we run on a constant clock schedule.” Another mother stated, “As a single parent it is really messed up. It is really full all the time, because when you work 10-hour days the kids don’t always have a lot of time with me.” For one mother, time binds meant removing herself from friends and potential sources of support: “I have told people to go away just because I have to get certain things done...You work extra hard to get it done. I never get a break, no not really.” Time constraints also meant being tired a lot of the time. “Sometimes I don’t go to bed until 2 or 3 o’clock in the morning because I don’t have any time during the day that I can do anything, so I find the time and I hate that because I get tired always.” Three mothers were unable to work because they had to spend most of their time taking care of their CF children. One was remarried and was supported financially by her husband and the other two received welfare and other public subsidies. Being a single parent, it is real hard to leave your job to come to the hospital when we are 4 hours away. Especially when he was little, I really felt bad about that. I would try to save up all my vacation time and all my sick days and use that for when we came up here, and as long as it was just once a year, that was pretty easy to do, but now that he is coming 2-3-4 times a year, I am unable to work. I don’t know of anybody that would hire me.

One cohabiting mother worked a night shift so that she had days free to do the treatments, another mother worked out of her home so she could work around her child’s needs. Four mothers worked full time and a fifth mother held 2 jobs. Only one mother did not work out of choice—she attended college and was supported financially by her second husband. Her child did not have a severe case of CF and was old enough to manage most of his own treatments—this mother was the only one that did not have to deal with financial and time stressors. For some of the mothers, the only respite they got from taking care of children and managing their child’s CF treatments was when the child’s condition worsened enough to hospitalize the CF child: When he comes to the hospital I guess I could call that a breather...I don’t know that it is really a stress reliever, as far as the emotional side of it, as far as him being here is real stressful, but as far as the physical and doing the treatments, I call that a break.

Other mothers agreed, “This week of him being in the hospital has been wonderful...After I leave

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the hospital at night everybody at Ronald McDonald House sits...and we laugh and joke and have a great time;” and “I get relief when he comes in to the hospital. Otherwise I’m with him all the time. I am able to go to the grocery store, but as far as taking 4-5 hours, I can’t because it worries me.” Most of the mothers worked hard at meeting the treatment regimen that had been prescribed for their children. Of course, they were being interviewed by a nurse who was known by them to be an expert on CF, so their answers may reflect partially an element of social desirability. Nevertheless, most of the mothers described treatmentrelated activities that would be familiar to anyone knowledgeable about CF, and the accounts rang true. For instance, most mothers reported having to remind their children repeatedly to take their medicine and to eat. Mother-child struggles over eating were particularly common. Finding foods the child would eat was often part of the battle and getting children to eat was difficult for some. The major challenge for some mothers was to pound their children (chest physiotherapy designed to encourage the release of secretions from the airways). This is physically demanding, time consuming, and not welcomed by the child: “We haven’t been doing his treatments real regularly because he fights me. It has been terrible.” “[My son] does not like to take time out to do the treatments, and says later or in a minute. He stalls and just says not now...just anything to stall.” Spending time communicating with school officials about the child’s health needs also was part of the management of the illness, as were frequent trips to the clinic and less frequent hospitalizations. These were tasks performed by the mother alone. Getting off work is a problem. I mean I have to get off work, and the longer I have to be here [the clinic] the more time I miss because I don’t get paid for the time I am here. Usually I have used all my time when the kids were sick in the hospital and I usually don’t have any extra.

Most mothers could not afford to miss work because money was tight. The mothers generally were the sole financial support for their children because they were economically independent from their former husbands. Only 5 of the fathers provided any financial support for their children. Two fathers who were supposed to pay child support did not. In the other families mothers did not seek child support, not because they did not need the money, but usually because mothers judged it to be simpler to live without having to hassle the fathers for money.

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New Partners Although these mothers were extremely close to their children and considered them their confidants and friends, they still wanted adult companionship and help in raising their children. New husbands or partners were seen as potentially able to help reduce financial burdens, share in doing household duties and caretaking of other children, and provide assistance in doing treatments with the CF child. Most mothers anticipated that the new partner would help raise the CF child. However, few felt like this had happened. One problem with new partners was their inability or unwillingness to understand the severity of CF and its’ implications. “I don’t think he [second husband] ever understood the severity of my son’s illness, which caused a lot of problems. I was accused of being on my son’s side too much and letting him get away with too much.” Although two stepfathers were the sole financial support of their families, which allowed the mothers’ more time for caregiving, and one new cohabiting partner provided occasional help with household tasks and watching the child when the mother worked, only one new partner assisted in doing the treatments. Most of the men were not involved actively in raising or providing care for the child with CF, nor did they reduce the mothers’ burdens in other ways. Only two women clearly felt as if they had benefited more from a new partner than it had cost them in added duties and greater stress. Instead, most of the mothers felt like they gained additional responsibilities with few or no reductions in their caregiving tasks. For example, some of the new partners brought children with them, or had children that lived elsewhere but that visited occasionally. The men generally expected that the women would fulfill the traditional caretaking activities of mothers for these stepchildren (e.g., cooking, cleaning, making sure children were behaving). “He expects us to be one big happy family...I didn’t want to be anybody else’s mother. I told both children I didn’t want to be their mother, but I would like to be their friend.” Besides being more work for these mothers, stepchildren often are not accepting of stepmothers who tried to enact the mother’s roles, particularly early in the relationship. Consequently, the stepchildren, whether they resided full time in the household or visited, often did not develop warm and friendly ties with their busy stepmothers, creating more stress for the women. One exception to

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this was a troubled adolescent girl who was befriended by her stepmother, a woman who spent a great deal of energy trying to help this girl get straightened out. This experience took an emotional toll, although, according to the stepmother, she helped the girl complete high school and avoid some problems, and they became close. Children of the new partners sometimes created other problems. Jealousy of the CF child, children with vastly different interests, conflicting household rules for his children and her children, and lack of agreement between the adults on discipline contributed to hostile or, at best, distant relationships between the child with CF and their stepsiblings. One mother was even concerned for the safety of her child with CF because older stepbrothers were so rough with him. The men tended to expect the stepmothers to sort things out between his children and hers. The intense closeness between mothers and CF children also created stress when there were new partners. Extremely close mother-child relationships affect the quality of stepfather-child relationships. Stepchildren may resent their stepfathers’ attempts to spend time with the mothers, and they may reject stepfathers’ attempts to befriend them (Hetherington & Clingempeel, 1992). Stepfathers often do not know how to develop friendships with stepchildren (Ganong, Coleman, Fine, & Martin, 1999), and it may be even more challenging when the children have serious conditions such as CF. The extreme closeness also may have some negative consequences for mothers and children. Disciplinary problems were exaggerated in these families—it is hard for a mother to punish her best friend. Guilt after disciplining a child was common. Stepfathers often wanted to introduce more rules and discipline, which was resisted by mothers. For instance, one mother indicated that she had to teach her new husband how to discipline her children— his approach was too harsh in her opinion and her son was unaccustomed to the types of punishments meted out by the stepfather. “Here [my son] had been my one and only for 5 years and, you know, he was mama’s little boy. [My second husband] made [my son] do a lot of stuff that I didn’t think he should have to do.” In response to what she saw as unrealistic expectations, “I said that I didn’t want to ever see that [type of punishment] again.” Years later, the couple still argued over expectations for the CF child’s behavior. Although establishing agreed-on rules for childrearing and the discipline of children is a common task for stepfamilies (Ganong & Coleman, 1994),

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the fact that one or more children have a chronic illness that is expensive to treat in terms of time and money adds complexity to this process.

When Fathers Remarried Mothers experienced additional complications when the fathers of the CF children remarried, as most of the men had done (Table 1). The mothers were vigilant in making sure that their chronically ill children were treated fairly in their other residence (i.e., with father and stepmother). Mothers wanted to be sure that the new stepmothers understood the seriousness of CF. In one family, communication between households about the child’s treatment occurred primarily between the mother and stepmother. This communication was not always smooth; in nearly every one of these families the mother and stepmother did not get along very well, arguing over children, child support, and children’s visits to their fathers. CONCLUSIONS It should be noted that all of the information we have about fathers’ caregiving of the children with CF was obtained from mothers. Fathers may have presented a different picture of the coparenting relationship. Although many couples remain married after a child is diagnosed with a chronic illness, some do not. For the mothers in this study, learning that they had a child with CF lead directly or indirectly to the dissolution of their marriages. These breakups further contributed to dynamics in which fathers grew more distant from children and mothers became more invested in the children’s care. This was not just because children lived with their mothers—although most children live with their mothers after divorce it is increasingly likely that courts award joint legal custody (i.e., decisionmaking responsibilities) to both parents (Emery, 1999). However, these mothers had the sole decision-making rights by default because, with a few exceptions, fathers were not in contact with their children who had CF. As with any chronic childhood disease, the demands of having a child with CF places enormous strains and stresses on families, regardless of the family structure. CF treatments can be demanding. Dietary management is important; CF children are encouraged to eat high-caloric, high-fat diets and nutritional supplements and medicines are used when weight cannot be maintained through diet alone. Respiratory management is also very important, and includes exercise, chest percussion, and

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postural drainage up to four times per day, and the use of mechanical devices to leave airways clear of mucous (see Brown & Schwind, 1999 for a description of CF treatment management). However, it appears that divorced mothers who have children with CF may face additional stressors and strains. For some, daily responsibilities were increased because their households lacked a second adult that could help with earning income, doing the treatments with the child, and taking care of other household tasks. Often, their only respite from the demands of care were when the children were hospitalized. Some women sought new partners to help reduce financial burdens, share in caregiving, and reduce household duties. Remarried men and women in general have reported similarly pragmatic motivations to remarry (Ganong & Coleman, 1989). In fact, remarriage is the most reliable way that women and their children can escape from poverty (Hill, 1992). Repartnering did not automatically resolve the problems of these mothers, however, because new men brought with them additional responsibilities and problems. In most cases, new male partners did not alleviate the problems faced by divorced mothers. Few of them seemed to be prepared for the tasks of merging two families while also coping with the treatment and care demands of having a chronically ill child in the household. Instead, they expected the mothers to assume many of the gender-stereotypical responsibilities of mothers in first-marriage families, and they expected themselves to be relatively free from caregiving tasks. For one thing, it is likely that the men found themselves on the outside looking in, almost as if they were appendages added to the single parent household (Bray & Kelly, 1998). We speculate that men found it hard to be involved in the care and rearing of the CF children because mothers did not welcome their input. In addition, these repartnered women often received less help from their own parents. Parents typically offer less assistance when daughters remarry or cohabit than they do when divorced daughters were single (Johnson, 1988). This norm of noninterference functions to discourage parents from intruding past the boundaries formed when offspring enter into domestic partnerships (Clingempeel, Colyar, Brand, & Hetherington, 1992). Moreover, all of the mothers had to handle interhousehold communication with the fathers of the CF children. Even when coparenting relationships are cooperative, communicating with some-

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one who is not in residence presents additional challenges for mothers. Most of the coparenting relationships were not very functional, which sometimes led to potentially dangerous situations for the children when they stayed in their fathers’ homes. Although most of the mothers described themselves and their children as coping adequately, it is probable that both mothers and children are at risk for health-related problems related to the added stressors associated with marital transitions. For example, in addition to CF-related strains, children may have to cope with conflicts between their parents, loss of contact with the father, frequent moves (resulting in new schools, new peer groups, and other changes), inadequate monitoring and poor treatment adherence when visiting fathers, conflicts with stepfathers and stepsiblings, and frequent changes in household membership. Moreover, mothers who are stressed may be less adept at parenting.

Implications for Practitioners Although this was an exploratory study, we think there are some implications for health care professionals who work with CF children and their parents. First, it is important for practitioners to realize that household and family are often not the same concepts, at least for most single-parent families and stepfamilies. Researchers and clinicians frequently make the error of assuming that focusing on the household is the same as studying the family; however, in nonnuclear families the family system often includes two households that are con-

nected by children who go back and forth between them (Coleman et al., 2000). By keeping this difference in mind, practitioners can guard against ignoring nonresidential fathers when educating parents, and, in general, working with parents to make them part of the treatment team. Divorced fathers must be included as part of the care team (Barbero, 1995). Second, new husbands and cohabiting partners also should be included in the treatment team. Mothers will continue to retain decision-making responsibilities, but new family members should be educated about CF, and efforts should be made to help mothers find a place for these men, and their children, in the lives and care of the child with CF. Third, health care practitioners should become aware of resources in their communities that might help single or repartnered mothers. By knowing about organizations such as Parents Without Partners and the Stepfamily Association of America, useful self-help materials, and local experts that may be able to educate mothers about what to expect when divorcing or remarrying, health care professionals will be assisting mothers and fathers in adapting to their new family situations. Finally, when contact has been minimal, nonresidential fathers should be required to go through an educational program if they wish to resume contact. Visitation arrangements must be made on the basis of the child’s needs for treatment. Health care professionals may need to prepare themselves to become expert witnesses to help judges make appropriate decisions about visiting arrangements.

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