SEARCH

SEARCH BY CITATION

Keywords:

  • Rheumatoid arthritis;
  • Relationship effects;
  • Couples

Abstract

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

Objective

To learn more about the effect of rheumatoid arthritis (RA) on couples' relationships and how couples manage the illness within their dyad.

Methods

Eight women with RA (ages 31–60 years) and their partners, and 4 men with RA (ages 43–75 years) and their partners were recruited from the rheumatology case load of a hospital in the UK. Interpretative phenomenologic analysis was used for data collection and analysis. During semistructured interviews, couples were asked about the effect of RA on their lives and relationship.

Results

This study found clear differences in the way couples managed the illness of one partner and in the nature of their illness-related interactions. Based on these differences, the couples were allocated to 1 of 3 groups: the shared illness management group (SIM), the ill partner in charge group (IPIC), or the conflict over management group (COM). In the SIM group, both partners attended appointments and shared decisions about illness management. In the IPIC group, the ill person claimed and was conceded the right to make autonomous decisions about illness management. In the COM group, the well partner was dissatisfied with the way the ill person was managing the illness, and conflict resulted.

Conclusion

Heterogeneity exists in the intradyad management of RA. Identifying each couple's style of illness management could make medical consultations and education programs more responsive to the needs and preferences of patients and their partners. Dissatisfaction of either partner with illness management and resulting conflict could be addressed, with benefits for both partners and possible improvement in disease management.


INTRODUCTION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

When an individual with a chronic illness is in a couple relationship, it is commonly assumed that this relationship will be the primary source of practical and emotional support for the ill individual. However, couple relationships in which one partner has a chronic illness may be severely challenged by the effect of the illness on each partner and by the resulting potential imbalance in the relationship and roles within the dyad (1, 2). Rheumatoid arthritis (RA) is a chronic progressive illness that has a major impact on both partners' lives. There are unpredictable, intense flares of disease activity that result in high levels of pain and disability, as well as loss of independence in the performance of many normal daily activities. Life plans are disrupted, and uncertainty and anxiety are common. Loss is experienced on many levels, necessitating a psychological as well as a physical adaptation process (3, 4). The partners may approach the challenge of illness together as a shared difficulty, and may experience mutual support and strengthening of the relationship (2); or, alternatively, they may develop separate responses to the challenge, including different coping strategies, which can be conflicting (5). As a result, existing relationship difficulties are likely to be exacerbated, increasing the strain, whereas greater cohesion is enforced by the dependency of the ill partner, which can become intolerable for some couples (2). At the extreme, the couple relationship may be lost.

The strain on the couple relationship affected by illness is significant not only because of the threat to an important source of support, but because the existence and quality of a couple relationship affect chronic illness outcomes, as previous research on dyads has demonstrated (6). Although the dyad is potentially the most significant source of support for the couple coping with illness, it may also, if dysfunctional, be a threat to the ability of each partner to cope successfully (7). Among the studies of couples coping with RA, clear links have been found between marital adjustment, depression, coping, and disease progression (8–12). A stressful couple relationship has an adverse effect on the progression of the illness and on the emotional health of both partners. Absence of spousal support (10), negative interactions such as criticism (11), or the wrong type of response (13–15) can all impact negatively on the ability of the person with RA to cope with the illness, and may actually increase disease activity and pain and reduce function (12). The healthy partners may also need support to cope with the effect of the illness on their lives. Helgeson (15) concludes that greater attention should be given to the needs of spouses not only because their distress is an important problem in itself, but also because spousal distress reduces support given to the ill partner.

The literature suggests a central role for the couple relationship in the management of RA and in coping with the impact of RA, but not much is known about how couples adapt to meet the challenges of RA and how they manage its impact on their dyad. In addition to the literature (5, 11, 14, 16), the authors' experiences as clinician and therapist indicated the existence of different couple interactions with regard to illness management, which could be obstructive or stressful. Better understanding of the impact on the couple and the way in which each couple manages the illness might be of assistance in improving the care of persons with RA. Therefore, the objectives of this study were to gain information about how couple relationships are affected when one partner has RA, and to gain information about how individual couples manage the illness.

PATIENTS AND METHODS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

Recruitment.

Local ethical committee approval for the study was obtained. The sample was drawn from the rheumatology case load of a hospital in the southwest of England.

The inclusion criteria were as follows: one partner receiving treatment for RA; both partners >18 years of age; both partners capable of coherent verbal communication; in a couple relationship of at least 6 months' duration, and such that each views the other as their next of kin; and no open hostility between the couple evident at time of recruitment.

Convenience sampling was used, supplemented by purposive sampling so that the sample would approximate the age range and sex balance of the RA population. A total of 16 patients gave preliminary consent. However, the partners of 3 of these patients did not wish to be involved, and another couple would have preferred a group interview but, because all other participants chose an individual interview, they were not interviewed. Therefore, 12 couples were included in the study (for convenience, the partner with RA will be referred to as the ill partner and the other partner as the well partner, even though in some cases the well partner also had an illness). In most cases (n = 9) the ill partner responded to a leaflet about the study that was given to them as they waited for their rheumatology outpatient appointment. Two couples were recruited after the ill partner was approached by the researcher while he/she was on the ward. A third couple was recruited by a clinical nurse specialist during a clinic visit. None of the couples were currently receiving any intervention or counseling.

Demographics.

The sample consisted of 8 women and 4 men with RA and their partners. The ill women ranged in age from 31 to 60 years with an average age of 50, and the ill men ranged from 43 to 75 years of age with an average age of 60. The well partners ranged in age from 29 to 72 years. Disease severity varied, but all patients had been prescribed at least 1 disease-modifying antirheumatic drug. Disease duration ranged from 1 to 19 years, and relationship duration ranged from 2 to 40 years. All couples were married, but the partners in 5 couples were not in their first marriage or couple relationship. Two patients had already been living with RA for some years when they began their present relationships, and 3 developed RA around the same time as their relationships began or soon after (Figure 1).

thumbnail image

Figure 1. Demographics of study sample.

Download figure to PowerPoint

Ten of the ill partners were still of working age, and 6 of these were in paid employment, 4 full time. Of the 9 well partners still of working age, 8 were in full-time paid employment. The 9th partner was no longer working due to her own illness.

Methods.

Interpretative phenomenologic analysis (17, 18) was chosen as the research method for the study. This method uses participants' individual perceptions as data, resulting from their experience of the phenomena under investigation, the meanings they ascribe to it, and their emotional responses. The method was considered particularly suitable for this study because the way in which couple relationships are affected by RA will depend on how couples experience, give meaning to, and respond to the illness emotionally and functionally. The attempt to gain insight into, and represent, the participants' personal experience is inevitably and necessarily mediated by the researcher's own experience and conceptions in an interpretative process. In this case, the researcher's perspective as a couple therapist influenced her probing of possible meanings and areas of interest during the interviews, as well as the interpretation of the data when they were analyzed.

When preliminary consent forms had been received from both partners, each couple was contacted to arrange the interview, which took place at the couple's convenience either at home (n = 11) or in the hospital (n = 1). At the time of the interview, a further consent form was completed and then demographic data were collected by means of a questionnaire administered by the researcher. Questions about the relationship history, family history, and attitudes to illness in family of origin were also asked. No formal measure of disease severity was used at the time of interview or recruitment, but overall illness severity was informally assessed by participants' account of the illness, observed and described disability, and medication required.

Couples were interviewed together because the researchers were interested in the couple interaction. Semistructured, in-depth interviews were conducted to gather a rich account of the participants' perceptions of the effect of RA on their lives and couple relationship. Interviews lasted between 70 and 90 minutes, with the exception of one, which was ended after 20 minutes when significant conflict developed between the couple. (In this case, the interview was terminated, and the interviewer continued discussion with the couple to address the conflict and to clarify whether they felt this was caused by the interview, which the couple denied. The researcher offered to discuss possibilities for help with their relationship and did not leave until she was assured that the couple could cope with the situation and were not experiencing undue stress that was not preexisting. The researcher subsequently wrote to the couple repeating the offer to discuss with them any issues that might have arisen as a result of the interview and possibilities for accessing help to address their difficulties. No response was received.)

A list of topics was compiled by drawing from the literature and the researcher's experience, and was used as a prompt to ensure that all areas had been covered during the interview (Table 1). This list was modified during the course of the research in light of emerging themes. Participants were encouraged to talk freely and develop their own areas of interest, except when this diverged too far from the effect of arthritis on their life and relationship. No new themes emerged by the end of the interviews. All the interviews were audiotaped, and field notes were made immediately after the interview that recorded the interviewer's impression of the couple, their relationship, and their home.

Table 1. Topics derived from the literature and the researcher's experience
Broad questionsInterviewer's topic check list
Please tell me the story of your illness.Diagnosis, emotional reactions, treatment, physical consequences
How do you feel it has affected you as a couple?Effect on roles, relationship, lifestyle, work, sex, social life, family, financial, making plans
How has it changed your relationship (if at all)?Roles, balance, dependency, sex
How much do you feel you share the illness?Information sharing, attendance at medical consultations, decision making, emotional burden
How do you manage the need to give/receive help?Solicited help, unsolicited help, the need to ask for help
What areas of conflict are there (if any)? 
How do you feel you have adapted to the illness?Coping styles, modification of lifestyle
How well do you feel your partner understands what it's like for you?Empathy, communication, support
How well do you feel you understand what it's like for your partner? 
How much do you feel the illness has taken over your life? 
What benefits, if any, have there been as a result of the illness? 
What support do you receive from outside the relationship?Family, friends, health care professionals
What additional support or help, if any, would you wish for? 

Each interview was then transcribed verbatim and checked by the researcher against the recording. Every transcript was read several times and examined in detail for themes, which were all noted and arranged into broad categories. During this process, several themes emerged that related to the way the couple managed the illness together, and having chosen this focus, all the transcripts were examined again to confirm the validity of the theme and build a clear picture of it. Four other experienced researchers were asked to read 1 or 2 of the transcripts each to see if they gained a similar perception of the couple relationship and illness response, and to see if they identified any themes that the researcher had missed. One-third of the transcripts were checked in this way. Differences were resolved by discussion and no additional themes were identified.

RESULTS

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

The different patterns of illness-related interaction, which emerged during this study, were reflected in different models of couple illness management.

Data analysis.

Several domains emerged relating to illness management within the dyad, including a) well partner's approval of the way the ill person is managing; b) conflict within the dyad concerning illness management; c) the ill person's prerogative to decide illness management; d) sharing in patienthood, indicated by use of “we/our” when talking about illness, and attending medical consultations together; e) support given by well partner; f) the ill person sharing illness information with the well partner; g) well partner's knowledge, interest, and wish to be involved; h) sex of the patient; and i) severity of illness.

The central issue regarding intradyad management of the illness was who possessed the prerogative to make illness-related decisions, including those regarding treatment and extent of activity limitation (domain c). Based on who in the dyad made these decisions, the couples could be placed into 3 fairly distinct groups (Table 2). In addition to domain c, 4 other domains seemed to have a close bearing on intradyad management, and so the findings for each couple in relation to these 5 domains are represented in Table 2.

Table 2. Findings for each couple in relation to 5 domains that had a close bearing on intradyad management*
Study numberSex of ill personWell partner thought ill person managing wellAny conflict or disagreement over managing illnessPrerogative to manage illnessShared patienthood/use of “we” and “our”Group
  • *

    SIM = shared illness management (defined by shared patienthood and prerogative); COM = conflict over management (defined by criticism of ill person's management and contested prerogative); IPIC = ill person in charge (defined by well partner's confidence in ill person's management and well partner accepting ill person's prerogative to manage illness).

1FYesYesSharedYesSIM
2MNoYesContestedNoCOM
3MNoYesContestedNoCOM
5FYesNoIll personNoIPIC
6FYesYesSharedYesSIM
8FYesYesIll personNoIPIC
10FYesYesIll personNoIPIC
11FYesNoIll personNoIPIC
12MYesYesIll personNoIPIC
14FYesYesIll personNoIPIC
15FYesNoSharedYesSIM
16MNoYesContestedNoCOM

There was evidence in 75% of the sample (n = 9) that there was some degree of conflict concerning illness management, and the other 25% (n = 3) all gave an example of at least 1 illness management issue that had caused contention between the partners. The main difference between the conflict over management (COM) group and the other 2 groups (ill person in charge [IPIC] and shared illness management [SIM]) was whether the well partner felt overall that the ill person was managing the illness badly and attempted to challenge the ill person's mode of coping with the illness and prerogative to manage it. Three couples fell into this category and consequently were placed in the COM group (3 of the 4 men with RA fell into this group). Six couples in which the well partner felt that the ill person was managing well and accepted his/her prerogative to decide illness management were placed in the IPIC group. The remaining 3 couples had a sense of shared patienthood and mostly shared prerogative to manage the illness and were placed in the SIM group.

In 7 cases, both partners appeared to be satisfied with the arrangement, although that did not necessarily mean that there were no areas of conflict. In 3 cases, both partners were dissatisfied with some aspects, and in 2 other cases the well partner was dissatisfied.

The Shared Illness Management group.

The SIM group (n = 3), in which all 3 ill partners were women, had a sense of shared ownership of the illness, which went beyond the acknowledged impact on their shared life. There was a sense of mutual support, balance, and trust in the relationships. Both partners attended medical consultations, and the pronouns “we” and “our” were used in discussing the illness and its treatment. Decisions regarding management of the illness were shared. Any illness-related disagreements had to do with the amount of help the ill partner was willing to ask for or accept: “I always find it very helpful if [male well partner] is there, because, as I say, I'm nervous and it means there are 2 of us to try and remember everything that's been said … And sometimes there are decisions to be made and I would naturally sort of want them to be our decisions” (female ill partner, couple 15); “We went to see our [general practitioner] who … wrote to this hospital and asked if we could come along for a consultation initially, which we did” (male well partner, couple 1).

Although this shared-ownership approach was clearly experienced as mutually supportive by all 3 couples, there was a danger of the well partner becoming overinvolved. The male well partner in couple 1 was distressed by his helplessness in the face of his wife's pain. She, although appreciating her partner's support, seemed to find his concern and involvement a little excessive and a threat to her identity: “I feel frustrated that I can't do more physically for [female ill partner] around the house, because she won't let me … I say, ‘let me do that for you, sweetheart.’ ‘I can do it.’ ‘I know you can do it, but I'm here, use me.’ ‘Don't treat me like a cripple’” (male well partner, couple 1).

In couple 15, the well partner's involvement resulted in considerable burden to him from providing nursing care to his wife and managing her numerous medical appointments and repeat prescriptions alongside his full-time employment. However, both appeared to take it for granted that he would continue to do this. Both couple 1 and couple 15 spoke of the illness management as a battle in which they united to fight against a health care system that could be inadequate: “Four-layer bandages seem to be quite a specialized thing to do. So far [male well partner] hasn't been allowed to be taught how to do them … trying to arrange for [male well partner] to actually have a training session is our next battle that we're in the process of fighting” (female ill partner, couple 15).

In couple 6, the illness sharing was enhanced by the male partner's comorbidity, and they managed both illnesses as a couple, maintaining mutuality and balance in the relationship. They enjoyed helping each other, which had become part of their bonding; however, there was some minor conflict because each wished the other would accept more help: “There are lots of things I would like to do and I can't do, but then [male well partner]'s the same with his [illness] … so we compromise really and just help each other” (female ill partner, couple 6); “We've both got something wrong with us in that case, that's why me and her do get on probably so well” (male well partner, couple 6).

The Ill Partner in Charge group.

The largest group (n = 6) consisted of 5 women and 1 man with RA and their partners. The relationships in this group were perceived to be well balanced and satisfactory to both partners in spite of high levels of support given to the ill partner. The group was characterized by the respectful, sensitive, and substantial physical and emotional support that was consistently provided by the well partner, sometimes asked for, sometimes without needing to be asked. This support went hand in hand with confidence in the way the ill person was managing the illness. Both partners believed it was the ill person's prerogative to manage the illness, attend medical consultations alone, and make autonomous decisions about the daily activities he/she would undertake based on his/her state of health. Some well partners found this easier to accept than others. The partner of one woman who had already had the illness for many years before their relationship began had no doubt: “It's down to her at the end of the day. If she wants to stop work or she wants to do something or anything that's to do with her illness, it's up to her. To me it's not up to anyone else” (male well partner, couple 11).

The ill person's effort was important to the well partners, who all respected their ill partner's attitude and adaptation to the illness and even expressed pride: “I do think it's important not just to sit back and accept what you've got and get into a routine of doing nothing … I think for myself that is very important, seeing, you know, effort put in” (male well partner, couple 5); “I think it's very important and it makes me proud that she's, she sort of gets on with things and she tries things although I get angry at times because she does too much. Yeah, I'm quite pleased with the way she's dealing with it. I like her a lot for it, you know, she's doing very well” (male well partner, couple 14).

None of the well partners in this group attended medical consultations with their ill spouse. In 2 cases, this was not seen as necessary, but was not ruled out. In another case, the ill partner did not wish her spouse to witness what she might become, and was therefore glad that he did not accompany her to the hospital. In the other 3 cases, the ill partner would not allow her partner into the consulting room: “I won't let him come in. I mean I think I'd walk out if he walked in, I feel that strong” (female ill partner, couple 10).

In all 6 of these couples, the ill person shared information from the consultations with his or her partner as he/she considered appropriate. The amount of information possessed and desired by the well partners varied considerably across the sample; 3 of the well partners would have liked access to more information. One felt he had been unsupportive initially, due to lack of knowledge. Another well partner was content to let his wife educate him about the illness as she saw fit and had no particular wish to know more. He was among several well partners, however, who referred to the way they had learned about their partner's needs over time and had learned to accommodate them often without thinking. Adequate information about the illness and good understanding of its effects were clearly important for the provision of support: “I found it very difficult to understand and I didn't think it was as serious as what it was. And then as I gradually learned along the way, it became a bit of an eye opener and I think I became a bit more sympathetic towards her. […] I used to think at one stage maybe she was pushing it a little bit, you know, and I look back and I feel so guilty about it because I didn't understand it” (male well partner, couple 14).

There was a sense of watchful restraint from the well partners because they tried to respect the ill person's independence but held themselves ready to step in whenever needed. This was clearly not always easy, and most (n = 5) thought there were times when their ill partner should be accepting help that they were avoiding or refusing: “She doesn't tell me if she's having a bad day or she's in a little bit of pain. When she's in a lot of pain she will, and when I notice her hands swelling up … I'd like to help more without mollycoddling and fussing” (male well partner, couple 10).

Understanding of his wife's need for autonomy was expressed by one well husband: “She's got to have a life, but she's got to do it her way, and she don't need me to put my opinions on to her” (male well partner, couple 11).

Because the well partners were also deeply affected by the illness, a certain amount of trust was involved in allowing the ill person to have control of the illness management. Trust was also required in the other direction, and one ill person referred in strong terms to the importance of being able to rely on their partner: “You've got to have somebody who you can lean on, you know, it's not a disease actually that you can have somebody you can't rely on. I mean basically if you can't trust somebody who's going to wipe your bum when you need it because your hands don't work, then they might as well not be there” (female ill partner, couple 14).

The ill partners all felt that they were able to rely on their spouse, but all had a tendency to be reluctant to ask for help, sometimes to an extreme degree, which was commented on by all the spouses except one: “You don't like asking for help … I mean he'll sit here in the evening, and then he'll get up and I'll say, ‘Where are you going?’ ‘Oh I haven't got a handkerchief.’ ‘Well, why don't you ask?’” (female well partner, couple 12).

The Conflict Over Management group.

The 3 couples in the COM group were all in their original long-standing couple relationships. One couple had divorced >10 years earlier, but then recently remarried after one partner's RA developed. Two of these relationships were generally conflicted, one seriously so, whereas the third only evidenced conflict around the illness. The ill person in each case was male. Only one male ill person in the study was not in this group. The main characteristic of this group was that the couple had not achieved a wholly satisfactory means of cooperating around the illness, and so the well partner was critical and distrustful of the way that the ill person was coping with RA. The well partners were experiencing negative impact from the illness that they were not able to control: “I know he's in a lot of pain but he doesn't help himself … He sits there and he feels sorry for himself” (female well partner, couple 16); “Every morning it was, ‘Oh I ache here and I ache there,’ and I said to him, ‘Most people are worse off than you, you know, you have to learn to live with it’” (female well partner, couple 2).

There was a lack of trust involved in the well partners' feelings that the ill person was not doing all he could, and a sense of inequity, frustration, and even of being deceived. Lack of communication and understanding led to critical feelings about the ill person, who in turn did not feel fully supported and was less inclined to discuss the illness with his partner: “She tells me I can do these things if I tried but you see I'm not that way inclined” (male ill partner, couple 2); “You don't tell me that you've got a flare up and I know because I can see he's walking a bit strangely or he's changing gear in the car with the wrong wrist or whatever it is” (female well partner, couple 3); “The reason that I don't tell you is that I don't want it to restrict what I enjoy doing. I know that if I were to say to you on a Sunday night, 'Ow, my ankle's flared up again,' you'd then say to me, ‘Well you can cancel that squash court on Tuesday then’” (male ill partner, couple 3).

The importance of communication to reduce conflict over illness management was identified by 2 persons in this group. The well partner in couple 2 found that she became less critical when she started attending medical consultations with her husband: “I find it easier to cope with, knowing more about it now that I go in with him” (female well partner, couple 2).

The ill partner in couple 3 realized that it would probably be helpful to give his partner more information about his condition: “One thing I hadn't really considered before was how me trying to pretend it wasn't as bad as it was, the effect that can have on [female well partner]. I probably need to be more honest with [her] about what I am or aren't suffering at any particular time” (male ill partner, couple 3).

DISCUSSION

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

This was a preliminary, primarily descriptive study intended to explore how the couple dynamic and the life of the couple was affected by RA. As expected, there was a significant impact on the shared life of the couple, but the main new finding was that couples adopted heterogeneous patterns of intradyad illness management. We did not set out to study couples' illness management styles specifically, and the questions posed were open with the intention of identifying issues or difficulties from the couples' perspective that might expose weaknesses in health care provision and warrant further investigation or possible intervention. Previous research has concentrated mainly on specific questions such as how the spouse affects coping (5, 11, 14), whether to include the spouse in education programs (19), or what factors affect the coping ability of the well spouse (8); however, the authors were unable to find any qualitative research that seeks to map out, from the couples' perspective, the impact of this illness on their relationships and shared lives. In particular, we are not aware of any existing research on different couple styles of illness management and their implication.

One shortcoming of the study is that recruitment was probably biased as a result of the method of sampling, in that couples whose relationship was severely strained or in which the well partner was generally unsupportive or felt to be overburdened would be less likely to spontaneously volunteer for the research. Further research into the effects on couples would probably benefit from some type of purposive sampling or random sampling in which individuals and couples are directly asked if they would be willing to participate. A leaflet that advertises the study and invites couples to respond is easy to discount without really considering it because no response is needed. Being directly asked to participate by the researcher or someone else who knows about the study requires a definite answer while still allowing individuals complete freedom to refuse. In addition, their decision can be more informed and considered because they will have the opportunity to ask questions. Even so, it is highly probable that many would refuse, because several of the patients in this study who initially made contact could not be enrolled into the study because their partner was unwilling to participate.

The sample size was limited by resources, and the smallness of the sample limits the generalizations that can be made from the data. It may be that other styles of intradyad illness management exist, such as well partner in charge, that were not identified due to the means of recruitment. Clinical experience indicates the possible existence of this style. A more specific investigation with a larger sample and a more formal means of classifying different styles would yield more information about the prevalence of each and their advantages and disadvantages.

The data may also have been limited because couples were interviewed together. For example, the male partner of one very distressed ill person did not reveal any of his own feelings and spent the interview trying to reassure his wife. However, there were benefits in creating the opportunity for couples to have a dialogue with each other about the effects of the illness, and several commented that they had learned something new from listening to their partner. It also made it possible to gain a sense of the general couple interaction and balance of power in the relationship.

Although the study has identified the existence of different styles of intradyad illness management, the significance of these styles requires further investigation. The finding that conflict in varying degrees associated with illness management was common suggests that this is an important area. Three basic patterns of illness-related interaction were found, none of which were entirely without strain. The advantages and disadvantages that were indicated by the study participants in each group are summarized in Table 3, but quality of life and functional measures could be applied to investigate this more thoroughly. It was clearly difficult for the well partner to have relatively little control over circumstances that affected him or her so much. This concurs with findings by Trief et al (20) who found that a high potential for conflict exists in couples living with diabetes because of conflict between the ill person's need for independence and the well partner's anxiety about the consequences of poor disease management.

Table 3. Advantages and disadvantages of illness management indicated by the study participants in each group*
GroupAdvantagesDisadvantages
  • *

    See Table 2 for definitions.

SIMAllows well partner to share responsibility and burden. Reduces burden of anxiety and distress on ill person. Well partner less likely to blame ill person for poor management. Negative feelings can be directed outwards towards health care instead of towards each other. Combined forces in dealing with health services. Well partner can share patienthood and also receive care. Mutual support.Loss of autonomy for ill person. Some couples might not tolerate high degree of cohesion required. Lack of privacy for ill partner. Increased burden for well partner, leading to overburden and “role strain” (25).
IPICIll partner retains control over fundamental aspect of his/her life. Ill partner retains autonomy, self respect, and privacy. Mutual trust may strengthen relationship. Well partner can be less burdened by illness and life less affected. Ill person feels he/she is making a contribution by taking responsibility for illness. Ill person benefits from partner's support.Well partner, who is also affected, may feel isolated, disempowered, and frustrated. Stress for well partner due to lack of control. Well partner may become distrustful and critical. Well partner may be insufficiently informed leading to overanxiety or lack of understanding of partner's needs. Well partner may lack support.
COMNone identified.Stressful for both partners. Negative impact on disease management. Potential loss of relationship.

More needs to be known about what predisposes dyads to adopt a particular illness-management style, and about the benefits and difficulties associated with each style. Although there were evident strains, the couples had mainly adopted an illness-related interaction that was consonant with their overall couple relationship dynamic, and all but 2 of the relationships were functioning satisfactorily. A study that compared the illness-management style with scores in the Dyadic Adjustment Scale (21) might reveal some interesting correlations, particularly with regard to the subscales of consensus and cohesion. Other questions are whether choice of management strategy is a response to illness severity and anxiety, or the result of other factors, such as comorbidity of the partners or the timing of the illness onset in relation to the relationship. It would be interesting to explore the relationship of illness-management style with preexisting relationship characteristics such as communication and balance of power, and the relationship with other preexisting factors such as ill persons' degree of self efficacy and family background. For instance, many participants in the IPIC group described an upbringing that predisposed them to self reliance. The fact that all the ill persons in the COM group were men suggests that there may also be sex differences that affect intradyad illness management.

Although more needs to be known, there are implications from the findings of this study for the management of medical consultations, not least because of the strong and sometimes conflicting feelings of the couple concerning attendance. Although the wishes of the ill partner have to be respected, the needs of the well partner should not be ignored, both for their own sake and because of the consequences for illness management. An important question is whether a couple is satisfied and functioning well with the style of illness management they have adopted. Asking patients about how their partners are responding to the illness or offering a consultation to the partner might help to identify difficulties the couple are having with intradyad illness management. It might also provide an opening to explore their illness-management style and whether it should be modified by, for example, inviting the partner into consultations or excluding him/her and perhaps offering a separate consultation to the partner.

An important next step therefore might be to develop some formal means of assessing couples' illness-management style. This could perhaps take the form of a brief questionnaire that combines a measure of relationship satisfaction and conflict with some questions about intradyad illness management, which could inform clinicians' management and educational programs and gauge the need for intervention. The ill person's coping might be undermined by a partner who wishes to have a great deal of involvement with the management of the illness. Conversely, a partner who is feeling isolated and sidelined from the management might be less than fully supportive and even openly critical, resulting in conflict and increased stress for both. Couples in the COM group are clearly at greater risk of relationship breakdown, and appropriate intervention could be offered after assessment of the cause of the conflict. Similar issues arise in the provision of education sessions and may be one reason why including well partners in group education has been found to be of variable benefit (19). Well partners in the IPIC group might benefit from individual or group education sessions without the ill partners, whereas couples in the SIM group would probably prefer shared disease-management education. Allocating patients and their partners to sessions that suit their illness-management style might improve uptake and outcomes.

Many researchers have pointed to the importance of considering the couple relationship and what part it is playing in the management of the illness (5, 6, 16, 19, 20, 22–24). This study indicates one possible approach and serves to generate some of the questions that need to be considered if couples affected by RA are to receive the support they need to optimize the management of the illness.

Acknowledgements

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

We would like to thank all those who volunteered to participate in this study for giving their time and being willing to talk about their experiences. We are grateful to Rachael Gooberman-Hill, Kav Vedhara, Jane Carter, Candy McCabe, Jenny Lewis, David Blake, Chris Eccleston, and Ed Keogh for helpful discussions, and to Lucie Byrne-Davies, Charlotte Paterson, Candy McCabe, and Louise Chambers for reading and discussing transcripts.

REFERENCES

  1. Top of page
  2. Abstract
  3. INTRODUCTION
  4. PATIENTS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES
  • 1
    Rolland JS. In sickness and in health: the impact of illness on couples' relationships. J Marital Fam Ther 1994; 20: 32747.
  • 2
    Ruddy N, McDaniel SH. Couple therapy and medical issues: working with couples facing illness. In: GurmanAS, JacobsonNS, editors. Clinical handbook of couple therapy. 3rd ed. New York: Guilford; 2002. p. 699716.
  • 3
    Ryan S. Living with rheumatoid arthritis: a phenomenological exploration. Nurs Stand 1996; 10: 458.
  • 4
    Shaul MP. From early twinges to mastery: the process of adjustment in living with rheumatoid arthritis. Arthritis Care Res 1995; 8: 2907.
  • 5
    Danoff-Burg S, Revenson TA. Rheumatic illness and relationships: coping as a joint venture. In: SchmalingKB, SherTG, editors. The psychology of couples and illness: theory, research and practice. Washington (DC): American Psychological Association; 2000. p. 10533.
  • 6
    Burman B, Margolin G. Analysis of the association between marital relationships and health problems: an interactional perspective. Psychol Bull 1992; 112: 3963.
  • 7
    Parker JC, Wright GE. Assessment of psychological outcomes and quality of life in the rheumatic diseases. Arthritis Care Res 1997; 10: 40612.
  • 8
    Revenson TA, Majerovitz SD. The effects of chronic illness on the spouse: social resources as stress buffers. Arthritis Care Res 1991; 4: 6372.
  • 9
    Keefe FJ, Smith SJ, Buffington AL, Gibson J, Studts JL, Caldwell DS. Recent advances and future directions in the biopsychosocial assessment and treatment of arthritis. J Consult Clin Psychol 2002; 70: 64055.
  • 10
    Lanza AF, Cameron AE, Revenson TA. Perceptions of helpful and unhelpful support among married individuals with rheumatic diseases. Psychol Health 1995; 10: 44962.
  • 11
    Manne SL, Zautra AJ. Spouse criticism and support: their association with coping and psychological adjustment among women with rheumatoid arthritis. J Pers Soc Psychol 1989; 56: 60817.
  • 12
    Zautra AJ, Burleson MH, Matt KS, Roth S, Burrows L. Interpersonal stress, depression, and disease activity in rheumatoid arthritis and osteoarthritis patients. Health Psychol 1994; 13: 13948.
  • 13
    Heijmans M, de Ridder D, Bensing J. Dissimilarity in patients' and spouses' representations of chronic illness: exploration of relations to patient adaptation. Psychol Health 1999; 14: 45166.
  • 14
    Reich JW, Zautra AJ. Spouse encouragement of self-reliance and other-reliance in rheumatoid arthritis couples. J Behav Med 1995; 18: 24960.
  • 15
    Helgeson VS. The onset of chronic illness: its effect on the patient-spouse relationship. J Soc Clin Psychol 1993; 12: 40628.
  • 16
    Schiaffino KM, Revenson TA. Relative contributions of spousal support and illness appraisals to depressed mood in arthritis patients. Arthritis Care Res 1995; 8: 807.
  • 17
    Crotty M. Phenomenology and nursing research. Melbourne, Australia: Churchill Livingstone; 1996.
  • 18
    Smith JA, Jarman M, Osborn M. Doing interpretative phenomenological analysis. In: MurrayM, ChamberlainK, editors. Qualitative health psychology; theories and methods. London: Sage; 1999. p. 21840.
  • 19
    Reimsma RP, Taal E, Rasker JJ. Group education for patients with rheumatoid arthritis and their partners. Arthritis Rheum 2003; 49: 55666.
  • 20
    Trief PM, Sandberg J, Greenberg RP, Graff K, Castronova N, Yoon M, et al. Describing support: a qualitative study of couples living with diabetes. Fam Syst Health 2003; 21: 5767.
  • 21
    Spanier GB. Measuring dyadic adjustment: new scales for assessing the quality of marriage and similar dyads. J Marriage Fam 1976; 38: 1527.
  • 22
    Manne SL, Zautra AJ. Couples coping with chronic illness: women with rheumatoid arthritis and their healthy husbands. J Behav Med 1990; 13: 32742.
  • 23
    Turk DC, Kerns RD, Rosenberg R. Effects of marital interaction on chronic pain and disability: examining the down side of social support. Rehabil Psychol 1992; 37: 25974.
  • 24
    Walsh JD, Blanchard EB, Kremer JM, Blanchard CG. The psychosocial effects of rheumatoid arthritis on the patient and the well partner. Behav Res Ther 1999; 37: 25971.
  • 25
    Gordon PA, Perrone KM. When spouses become caregivers: counselling implications for younger couples. J Rehabil 2004; 70: 2732.