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When spouses become caregivers: counseling implications for younger couples.

With increased technology and advances in medical treatment, more people will be living longer with chronic health conditions requiring that more care be provided in the home. Chronic illness frequently creates profound difficulties for both the diagnosed individual and other family members, resulting in increased worry, anxiety, and stress. Illnesses that typically produce debilitating effects in a younger population (e.g., multiple sclerosis, cardiovascular disorders, systemic lupus erythematosus) can lead to additional pressures if the illness worsens and family members assume caregiving responsibilities. Although a number of studies have examined caregiving related to assisting older individuals (Faison, Faria, & Frank, 1999; Guberman & Maheu, 1999; Lieberman & Fisher, 1995; Weinart & Long, 1993), relatively few have focused on younger families, particularly younger spouses who may also be balancing other life responsibilities (Aronson, 1997; Kurz & Cavanaugh, 2001; Lewis, Woods, Hough, & Bensley, 1989). Both the person with the chronic illness and spouse may need to re-adjust established roles within the family structure in addition to facing the substantial task of adapting to serious illness.

There has been much research on marriage and much research on disability, but little research that has combined these two issues (Parker, 1993). This is a crucial consideration as younger couples struggle with adaptation to chronic health conditions and the impact on their relationship. Schumacher (1995) noted that, when a spouse assumes a caregiving role, there are many changes in the patterns of relating, and often each spouse must acquire new skills and insights. The impact of the illness or disability on the relationship between spouses and marital quality may be significant. Illness demands may expend family resources and affect the well spouse's perception of the marriage (Lewis, Woods, Hough, & Bensley, 1989). Both the well and the ill spouse may feel isolated while facing immense concerns. Consequently, these tensions may exacerbate the stress of the illness. As Speziale (1997) described, even minor adjustments to chronic illness, in areas such as sexual intimacy or cognitive and emotional responses, may diminish closeness and cause strain in the relationship.

When examining marital quality in caregiver marriage, one must also consider factors that contribute to marital quality in general. Universal factors that enhance marital quality include love, romance, physical intimacy and communication (Carlson & Sperry, 1999; Sternberg & Barnes, 1988). Coping resources and adequate social support can also enhance marital quality (Lewis & Spanier, 1979; McCubbin & Patterson, 1983). As Kurz and Cavanaugh (2001) noted, a significant underlying component of marital relationships are that "they are voluntary and sexual and can be dissolved" (p. 182). This type of relationship obviously differs from those where a child is providing care for an ill parent (AARP, 2000). Beliefs about caregiving responsibilities may change when one considers the impact on a marriage as opposed to more socially binding roles of parent-child.

Scope of the Problem

Research has shown that individuals who provided care to a spouse with a disability were six times more likely than noncaregivers to experience depression or anxiety (Cannuscio, Jones, Kawachi, Colditz, Berkman, & Rimm, 2002). Caring for a spouse was associated with significantly greater symptoms than caring for a parent with a disability. Further, a study on caregiving from the recipient's perspective revealed that spouses with disabilities had negative reactions such as depression and low self-esteem related to having their spouse care for them (Newsom & Schutz, 1998). Krausz (1988) asserted that the disability of a spouse presents a serious threat to marital quality in caregiver marriages. In a qualitative study, researchers interviewed wives caring for husbands with disabilities (Wilson, 1990) and identified the following three major concerns: (1) the need for constant medical attention, (2) the effect of the spouses' illness on their social relationships with others, and (3) financial concerns.

Purpose of this Study

The purpose of this article is to examine the role of caregiving as it relates to younger spouses who have partners with chronic illness. Caregiver marriage is defined as a legally married couple, where one spouse has a chronic illness or disability. This article will discuss issues related to caregiver marital quality, balancing multiple roles, and ways in which roles may differ for male and female caregivers. Implications for counselors will be explored and strategies provided that may help caregivers effectively manage their roles, sustain marital relationships, and maintain positive family functioning despite the illness problem confronting the family.

Caregiver Burden and Role Strain

According to Faison, Faria, and Frank (1999, p. 243), caregiver burden is defined as the effect of stressors on family members who provide care for a physically or mentally ill person. Although prior research has focused largely on the problems associated with caregiving, more recent research has also begun to identify positive aspects to the experience (Berg-Weger, Rubio, & Tebb, 2001; Veltman & Cameron, 2002). Individuals frequently feel a sense of pride and competence in being able to assist their ill partner. Conversely, Rohrbaugh and associates (2002) note that for spouses assuming the caregiving responsibilities, distress over multiple roles may be inherent. Carter and Carter (1994) further suggest that a spouse's illness may have a negative impact on the marriage and may significantly damage marital interactions.

Role strain can be described as a feeling of stress that results from competing or excessive demands from multiple life roles (O'Neil & Greenberger, 1994). Studies examining the issue of role strain in regards to caregiving and chronic illness have identified several factors that may place a couple's relationship at risk. Kurz and Cavanaugh (2001) found that strain was created by the number of new and serious roles the well spouse had to assume. Participants reported the difficulty of being observant to their spouse's physical condition and needs while still staying alert to their job duties (Kurz & Cavanaugh, 2001). In addition, individuals in caregiver marriages have reported less ability to remain attentive to the quality of their marital relationship which may result in depression, loneliness, and less physical intimacy (Carter & Carter, 1994; Lewis, Woods, Hough, Bensley, 1989). According to Parker (1999), caregivers eventually make sacrifices in order to handle new responsibilities. McNeff (1997) emphasized the need for the illness to be seen as a joint issue to handle so that couples feel more empowered in their situation.

Theory of Family Stress and Coping

The Double ABCX theory (McCubbin & Patterson, 1983) defined family stress as a state that arises from an imbalance between demands on the family and the family's resources for coping. The way the family copes with chronic stress influences the degree of adaptation. Adaptive coping strategies include family efforts to cooperate, identifying community resources, and making compromises (McCubbin & Patterson, 1983). Applying this theory to caregiver marriage, one could assert that the demands inherent in the caregiver role and role of spouse (in addition to other roles such as parent and career person) could exceed the resources or capabilities of the couple, resulting in feelings of stress. The couples' coping behavior in response to the stress of having multiple demands and limited resources would influence the couples' adaptation to the stressor. Coping strategies might include getting extra help around the house, changing their career goals to create less strain on the marriage, seeking counseling, or other methods (McCubbin & Patterson, 1983). Coping issues will be discussed further in the implications for counseling section.

Equity Issues

Equity is another relevant factor to the discussion of caregiver marriage. Equity refers to a feeling of fairness and a perception of balance between the relative rewards and costs of the relationship. It does not refer to objective equality, but rather to a perception of fairness. Research has demonstrated a relationship between greater perceived equity and greater martial quality (Rosenbluth, Steil, & Whitcomb, 1998; (Wilkie, Feree, & Ratcliffe,1998). Thus, if each spouse in the caregiver marriage perceives the relationship as fair and equitable, this will contribute to marital satisfaction. Weinert and Long (1993) found that many participants in their caregiving study perceived their spouse to be the person they counted on the most for support even if the spouse was the ill partner. Consequently, although spouses may not be able to do the same chores or household tasks as they were prior to the illness, if they are perceived to be emotionally an equal partner, the relationship may be more satisfactory. Flexible gender roles may also contribute to greater marital success.

Gender Implications in Caregiving

Gender differences have been demonstrated regarding the effects of the caregiver role. For example, Rohrbaugh and colleagues (2002) reported wives caring for spouses with congestive heart failure reported higher role overload than male counterparts because their husbands relied more exclusively on them for social support. In addition, caregiving wives, as compared to caregiving husbands, perceived themselves to possess less effective coping strategies and to be more likely to receive outside criticism about how they were handling the situation. Female caregivers reported increased loneliness and less life satisfaction than male caregivers (DesRosier, Catanzaro, & Piller, 1992).

The 1997 National Family Caregiver Survey indicated that the typical caregiver is a married woman in her mid-forties involved in elder care (AARP Research, 2002). Limited research has investigated gender differences in the caregiving process. What has been done suggests a distinction in the manner in which the caregiving role impacts men and women. Weinert and Long (1993) found caregiver spouses in rural areas reported having less social support than did caregivers in urban areas although this perception differed based on gender. Women caregivers in rural areas reported having friends and family members they could look to for support. They also reported having a professional and outside resource system. Conversely, men appeared to handle their caregiving responsibilities internally and relied on few persons other than their ill spouse for emotional support. Weinert and Long (1993) suggested that this difference in response to chronic illness place men at considerable risk for more fatigue and tension. Kramer (2002) also concurred that men tend to have fewer confidantes other than their wives.

Thompson (2002) described the caregiving style of men as distinctly different from women. He reported that men frequently adopt a more managerial approach to the caregiving process that provides them with a greater sense of control. Women caregivers may have to assume the financial responsibility of the household (Parker, 1993) within a society that has traditionally emphasized men as the primary financial provider. This is particularly critical when cultural factors also reinforce that perspective. These alterations can create despair and depression in one's ability to maintain previously ascribed roles.

Childcare issues

As noted earlier, relatively few studies have examined childcare issues for young families headed by a parent with a disability (Aronson, 1997; Kurz & Cavanaugh, 2001; Lewis, Woods, Hough, & Bensley, 1989). Kurz and Cavanaugh (2001) reported that well spouses need to maintain normative circumstances in the family (e.g., assisting children in their development; dealing with deaths in the family) and handle the illness demands. As result of their caregiver role, well spouses may have less time and energy to devote to childcare, whereas the spouse with the disability or illness may also have less energy because of the illness. Miller, Houston, and Goodman (1994) discuss the effects of having a spouse with a disability on overall family functioning in terms of Maslow's hierarchy of needs. They contend that the focus may be more on the basic needs (e.g., physiological needs) than on higher order needs (e.g., self-actualization) in caregiver families. Children may also need to help with the caregiving or take on additional tasks around the house. Thus far, discussion has focused on families with one well spouse and one spouse with a disability. In single parent families headed by persons with disabilities, the strain may be considerably greater, and the need for outside help or additional social support may be even more crucial. The present authors contend that more research is needed to examine how younger families with children are impacted when one parent has a disability or serious illness.

Implications for Counselors

Caregiving is a difficult task for anyone. As Guberman and Maheu (1999) noted, since caregiving often involves family members, it is sometimes easy to forget that it is work. But to sustain the activity requires considerable time and energy to plan and coordinate the care. Persons may need assistance in dealing with both the emotional stress and physical obligations involved in caring for a person with a disability. Counselors can be proactive in addressing issues that pose potential problems to the marriage and assist each partner in adjusting to the new roles and circumstances in his or her life. One measure that can be used to assess couples' marital adjustment is the Dyadic Adjustment Scale (Spanier, 1976). Counselors may need to examine the caregiving style of both men and women to assist them in developing an approach that helps shelter them emotionally. For both partners, the added responsibilities may add new complications to the already complex marital relationship.

Counselors working with couples in a caregiver marriage can start by asking the couple to describe the problematic areas in their lives, and find out what they wish to focus on in counseling. Counselors need to avoid making assumptions about the couple based on limited information. Although this may seem like an obvious statement, research has shown that individuals, and even professional counselors, may make inaccurate assumptions about individuals with disabilities (Szymanski & Trueba, 1994). One faulty assumption that is often made is that there are only negative aspects to caregiving, but here we consider the positive aspects as well.

Positive Aspects of Caregiving

Counselors can assist couples in recognizing positive aspects of caregiving. Past research has indicated many problematic aspects of caregiving, but counselors might also be cognizant of rewards, such as a sense of pride or competence, or the feeling of being needed (Berg-Weger, Rubio, & Tebb, 2001; Veltman & Cameron, 2002). Yalom (1995) highlighted the connection of altruism to improved self-esteem that, through helping others, one can gain increased feelings of self-worth. Parker (1993) suggested that individuals in the caring role may begin to "revalue" themselves and that couples can find facing the illness experience together may actually bring them closer to one another. Caregivers have reported pride in developing increased patience and an ability to forfeit or delay their own personal needs (Kurz & Cavanaugh, 2001).

Caregivers have noted that their caring responsibilities have actually strengthened their spiritual connection as well as helped them identify inner strengths they possess (Berg-Weger, Rubio, & Tebb, 2001). They may gain a more positive view toward others as they learn that friends and other family members can also be relied on for assistance (Berg-Weger, Rubio, & Tebb). Counselors can help individuals identify positive aspects of their caregiver role, cope with the problematic areas, and help the couple negotiate their roles in the marriage relationship in order to achieve perceptions of equity in their relationship.

Communication Skills

Counselors may need to help individuals in caregiver marriages improve their communication skills. Couples may need assistance in order to discuss concerns with each other and recognize that they may hold differing beliefs about how the illness impacts their life. It is important to recognize that each spouse may be impacted differently in terms of their emotional response to the illness. Aronson (1997) found that persons with Multiple Sclerosis (MS) and their caregivers reported dissimilar influences on quality of life. Persons with MS reported that quality of life was lowered for them due to their limited abilities and opportunities to engage in social interaction. In contrast, quality of life for caregivers was more negatively impacted by the specific disease course of their partner.

Rolland (1994) stated that "sensitive, open, direct communication about a range of issues is essential to living well with chronic disorders" and that "identifying and normalizing difficult feelings, establishing clear illness boundaries, and re-balancing relationship skews all require effective communication" (p. 329). Hudson & O'Hanlon (1991) suggest that counselors help spouses reframe their complaints about one another into action requests, and help spouses compliment and praise desired behaviors in each other.

Intimacy Issues

It is also important for the couple to make time for affection and intimacy, whether this means going out on a date, or just spending a few minutes together each day. Karpel (1999) recommended that counselors use probing questions to help spouses define their intimacy needs. For example, a counselor might ask each spouse "How do you think your partner most enjoys being close or intimate?" or "What do you do when you want to feel close to your partner" (Karpel, 1999, p. 89). Rolland (1994) discussed physical intimacy in relation to physical illness and disability. Intimacy may be defined broadly, to include intellectual, spiritual, and recreational intimacy as well as sexual intimacy. In addition, Speziale (1997) reported that it may be useful for couples to examine prior beliefs about intimacy and sexual behavior. Couples may need to work at restructuring beliefs and "reworking and revising the marital sexual scripts that have been enacted over the course of their relationship" (Speziale, p. 27). As McNeff (1997) reports, clear boundaries must be established within caregiving relationships so that issues of custodial care do not impede sexual intimacy. Some caregiving tasks might best be taken care of by an outside person. Individuals may also lack adequate information about the illness and its ramifications in terms of sexual intimacy. Research has demonstrated that when couples face high illness demands, they rarely are given advice or information regarding their sexual relationship (Parker, 1993). Therefore, education about the implications of the disabling condition, particularly regarding issues of sexuality, may need to be considered. Esmail, Esmail, and Munro (2001) suggest that education can involve suggestions about adaptive devices and equipment as well as help in attitudinal change to assist couples in redefining sexuality in broader terms.

Coping Skills

Counselors may be instrumental in providing preventive strategies to address issues that can potentially harm the relationship over time. Counselors might ask couples what coping strategies they currently employ. Current coping strategies can be evaluated to determine effective and ineffective strategies for the couple. Strategies that have been identified as successful coping techniques may need re-working due to changes in the relationship from illness or other family stressors. Pakenham (1998) noted that couples who utilize more similar coping strategies may be most successful and suggests that couples examine their coping efforts for similarities and differences, and look for instances of a maladaptive coping. Counselors can help couples generate new ways of coping that they have not yet considered. Folkman and Moskowitz (2000) outlined three specific coping techniques that could be taught by counselors and could decrease stress in populations such as caregivers. These three techniques are: positive reappraisal, problem-focused coping, and finding meaning through positive events. Each will be discussed in detail.

First, Folkman and Moskowitz (2000) emphasized the need for positive affect in effective coping. One specific technique they recommended for generating positive affect is to teach the coping strategy of positive reappraisal, which involves reframing the situation to emphasize the positive aspects. They asserted that caregivers can be helped to reappraise the often stressful experience of being a caregiver to see their role as valuable and worthwhile, and that this kind of coping strategy helps motivate caregivers (Folkman & Moskowitz, 2000). In a qualitative study of caregiving partners of men with AIDS, it was found that some caregivers emphasized positive aspects of caregiving activities, such as how their role helped preserve the dignity of their partners and how they could demonstrate their love through their care for their partners (Folkman, Chesney, & Christopher-Richards, 1994). Use of positive reappraisal can be assessed using the Ways of Coping questionnaire (Folkman and Lazarus, 1988).

Second, Folkman and Moskowitz (2000) recommended that counselors teach problem-focused coping, which involves taking action towards resolution of a specific problem and can include gathering information, making decisions, and obtaining resources. Folkman and Moskowitz (2000) pointed out that individuals caring for a loved one with a serious illness may feel helpless because they cannot cure or control their partner's disease, but that if they pursuing specific, attainable goals related to caregiving, they will have more positive affect. Thus, caregiver spouses may feel better when they focus on manageable problems that can be solved related to caregiving, rather than focusing on the overall illness of their spouse. Counselors can help caregivers set attainable goals and make progress towards them to achieve a feeling of positive accomplishment. If counselors wish to assess problem-focused coping skills, they can use the Problem-Focused Coping Scale (PF-SOC; Heppner, Cook, Wright, D.M., & Johnson, 1995).

Third, Folkman and Moskowitz (2000) discussed how individuals can find meaning in positive events. They proposed that individuals under stress, such as caregivers, may either plan positive events (e.g., an enjoyable outing such as a picnic) or may focus on positive aspects of ordinary events (e.g., seeing a sunset or receiving a compliment) in order to offset the negative aspects of caregiving. Counselors can encourage caregivers to plan positive events and note positive aspects of spontaneously occurring events. One way to emphasize positive events that occur during an average day would be to encourage caregiver spouses to keep a journal in which they note one positive thing that happened each day that they are grateful for.

Another way of reducing stress in caregivers is through involvement in outside activities (Kurz & Cavanaugh, 2001). These activities may range from attending religious services to having time to watch a child's sports event. Guberman and Maheu (1999) emphasized the importance in elder care of providing greater home services, respite care, emergency care systems, and support groups for caregivers. Similar services for younger caregivers are also critical. Assistance in terms of financial counseling associated with costs related to illness and information pertaining to adaptive equipment is also essential. Home health care professionals may also educate neighbors and other family members about the care needs of the ill spouse so that they may step in on occasion to relieve the caregiver of duties (Weinert & Long, 1993). This may provide an opportunity for caregivers to have time for themselves or to interact with their spouse as a more normal couple without needing to address illness demands. The present authors suggest that counselors may wish to help caregivers focus on self-care as well, including getting adequate rest, nutrition, and exercise, as well as time for relaxation. If possible, counselors might help caregiver spouses set aside time for themselves and give themselves permission to do something pleasurable alone (e.g., take a bath, go for a walk, read a book) or with a friend. Research has demonstrated that coping is influenced by the availability of social support (Folkman & Moskowitz, 2000). Social support is an important variable for caregiver marriage, and will be discussed separately.

Social Support

An adequate social support network can be a crucial resource for individuals in a caregiver marriage. As Speziale (1997, p. 23) suggested, couples who rely solely on each other for emotional support place an "impossible burden on the relationship" and actually distance themselves from the resources that could be beneficial. Counselors can work with caregivers to make use of available supports, as well as to build their support networks. Although men may adopt a more managerial model of caregiving, it appears that they have less support from persons other than their spouses. In addition, they may be less experienced in asking for assistance or even in dealing with social agencies (Kramer, 2002). Femiano and Coonerty-Femiano (2002) describe several interventions helpful for working specifically with caregiving men which include: a) recognizing that male caregivers approach tasks differently than females, b) assisting men in identifying their strengths and stressors, c) identifying concealed feelings that may not be evident, d) promoting emotional, social, and educational support, and e) assisting with practical concerns.

Caregiver spouses may also find support groups to be helpful. Counselors could help caregiver spouses find ongoing groups in their community, or help start such groups. Toseland and Rossiter (1989) discussed benefits of support groups for caregiver populations. These benefits included reducing social isolation, being able to share feelings with others in similar situations, and normalizing caregiver experiences (Toseland & Rossiter, 1989).

Conclusion

Caregiving for a partner with a chronic illness can be an arduous task. Clearly, some relationships will be stressed beyond the point of survival and will come to an end (Parker, 1993). But many couples may find that their relationship is strengthened through the experience. Counselors can assist couples in dealing with stressors that have the potential to harm their relationship or are already creating problems within the marriage. In addition, counselors may help couples to re-examine their strengths in both the caregiver and care receiver role. Frequently, professional focus is on the negative aspects of their experience. Many individuals find that this process can initiate greater personal growth and increase feelings of pride about their ability to cope and assist a loved one. Prior marital quality will influence the present circumstances in the marriage. Despite the hardships in marriages that involve caregiving, counselors must recognize that most marriage partners bring many strengths to the relationships which include love and commitment (Parker, 1993). Finally, counselors need to recognize that the marital relationship between caregiver and ill spouse needs to be sustained in terms of love, affection, and intimacy. These factors will all influence a successful relationship and advance the ability to cope.
Table 1
Focus Group Location and Participation

Group Description of Location # of Participants

Families North-Central * 1
 Suburban (close to metropolis) 7
 North-Western 12
 Southern 6
 Southern 4

* Since only one parent attended this focus group it was conducted
more in the style of an interview. The interviewer used the same
questions used in the other focus groups.

Table 2
Case Study Families: Descriptive Information

Family Description Child's Child's Disability
 of Location Gender Age

Family 1: Suburban Female 19 tubular
 (close to myopathy
 metropolis)

Family 2: North-Central Male 19 amino deficiency,
 asthma, dysmotility
 Female 12 GI complications,
 asthma

Family 3: Western Male 11 Down Syndrome


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Phyllis A. Gordon

Ball State University

Kristin M. Perrone

Ball State University

Phyllis A. Gordon, Ph.D., Ball State University Teachers College, Room 622, Department of Counselling Psychology and Guidance Services, Muncie, IN 47306. Email: pgordon@bsu.edu
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Author:Perrone, Kristin M.
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Date:Apr 1, 2004
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