Patients and relatives coping with inflammatory arthritis: Care teamwork

Abstract Objective To explore how patients and relatives experience and talk together about their life with inflammatory arthritis. Design Qualitative research. Setting A convenience sample was used. Participants were recruited in seven rheumatology departments in France. Participants Patients with rheumatoid arthritis or spondyloarthritis, agreeing to participate in the study with a relative, age at least 18 years. Data collection and analysis Two psychologists conducted face‐to‐face interviews with 20 patient‐relative dyads (40 individuals). A thematic analysis followed a general inductive approach. Results Saturation was reached after interviews with 20 dyads. The analysis revealed four main themes: (a) disease ‘lived’ together: a new role for the relative (providing help in physical tasks, emotional support, acting as a driving force, having a role in medical care) and communication around the disease (not focusing on the disease); (b) impact of the disease on the relationship; (c) social impact of the disease on the dyad (social isolation); (d) difficulties and needs of the relative (need to better know the disease). Conclusion This study has highlighted the importance of recognizing the role of the relative in the management of inflammatory arthritis disease, especially when medical decisions are shared with professionals. A joint approach to treatment is a basis for coping with the disease. This approach supposes (a) discussions about relatives’ new roles to clarify them, (b) patients’ and relatives’ communication skills and (c) a good understanding of each other, which can be improved by providing information on the disease and coping strategies for both the patient and the relative.


| BACKG ROU N D
The transition from a state of good health without disease to a state in which one must live on a daily basis with a lifelong disease often depends on practical and emotional support and care from relatives, especially partners. 1 Symptoms of inflammatory arthritis (IA) (rheumatoid arthritis [RA] or spondyloarthritis [SpA]), especially pain or fatigue, 2 are not always visible and are unpredictable, which has specific consequences, especially on relationships with others. 3 In these diseases, help in physical tasks and emotional and social support are crucial, [4][5][6][7][8] and adjustment to the disease necessarily 9 implies adjustment for those who live close to the person. 10 Supportive relationships seem to foster better coping strategies to adjust to rheumatic diseases, which leads to better psychological adjustment. 9 Relatives' and patients' adjustment to a disease is complex, and there is room for improvement in the support provided to the dyad. In rheumatology, the participation of relatives in therapeutic patient education (TPE) interventions is often limited to relatives participating in a few sessions with the patients and rarely relatives participating in a dedicated session 11 or active involvement in the intervention. 12 In RA, results of TPE targeting relatives are rare and controversial. 8,13 EULAR recommendations for patient education for people with IA 14 point to the need 'to develop and evaluate TPE for significant others (partners, spouses, family and carers)'.
The first step in developing interventions to support dyads is to study their needs, functioning and communication. To highlight the interactions within the dyad, dyad partners were interviewed together, which has rarely been done, especially in IA. 15 They had the opportunity to express themes, difficulties, mistakes or how they cope together. Shared interviews have been used for couples with other long-term diseases. For example, in couples with one individual having diabetes and osteoarthritis, couples described their coping activities as individual, shared or a mix of individual and shared efforts. 16 For couples with one individual having multiple sclerosis, shared interviews highlighted how roles and responsibilities for the information search can change over time, often depending on symptoms. Usually, only one family member, the patient or their partner, takes this responsibility. 17 For couples with one individual having cardiovascular disease, some assessed the illness as a transformative experience in their lives, bringing them closer together. Some couples experience the illness as a threat for both partners, and the disease is faced as a mutual task. Other couples assessed diverse possibilities for positive change but did not achieve them. 18 The objective of this study was to explore patients' and relatives' experience of IA and their difficulties, relationship, communication, coping strategies and needs. The results may help develop TPE interventions involving relatives to support them in their difficulties and in assuming their role and to optimize communication and the relationship to improve the adjustment of the dyad to the disease.

| Sample
A convenience sample was used. 19 Participants were recruited by rheumatologists during their consultations in seven rheumatology departments located in medium or large cities from different regions in France with a coverage of urban or rural areas.
Inclusion criteria for patients were RA or SpA, agreeing to participate in the study with a relative and age at least 18 years. Exclusion criteria were a major comorbidity that might increase the burden of IA (eg, severe heart failure, neurological disease). Relatives were invited to participate by patients or directly during a consultation when they were present. Relatives were defined as a close relative or a person who shows a special interest in the person.

| Interviews
After having obtained written informed consent, patients and relatives were first invited to complete a self-reported questionnaire regarding sociodemographic and medical status. Then, between October 2014 and July 2015, three women health psychologists (CV PhD in psychology; CD master's degree in psychology) conducted face-to-face interviews with the dyad (patient and relative interviewed together) in the hospital centre in which the patient was followed up.
Researchers were all trained to conduct interviews; they had experience in caring for patients with a long-term disease in general but were not specialized in patients with IA care. They did not know any of the patients or relatives before the study commencement.
Two were specialized in health psychology research, and one was a clinical psychologist.
Only the researcher and the dyad were present during the interviews. Interviews lasted 60 to 90 min. They were audio-recorded and then transcribed verbatim. The interviews were semi-structured and conducted until data saturation was achieved (no new concepts emerge during the last interviews). 20,21 None of the interviews were repeated, and transcripts were not returned to participants for comments. Field notes were not taken during or after the interviews. The interview schedule (Table 1) was built from a literature review 22 performed by the project working group consisting of rheumatologists with experience in TPE, a methodologist, psychologists and a patient from a patient association. The interview schedule was tested with 3 patients, but no change was needed.

| Other data collected
Both patients and relatives provided data on sociodemographic char-  25 Zarit Burden Interview). Disease activity questionnaires (RAPID3 and BASDAI) completed by relatives assessed the patient's state. Caregiver experience questionnaires (CRA) completed by patients assessed the patient's feeling of the relative's experience. 26

| Data analysis
A thematic analysis was conducted by two psychologists (CD, CV), following a general inductive approach. 27 This type of qualitative analysis enables the researcher to extract themes from the participants' discourse in order to capture their perception of the studied subject. After reading all transcripts, the two investigators isolated themes and subthemes and created a preliminary coding schedule.
After discussion with part of the research team (CD, CV, AU, EB), the coding schedule was revised.

11
Disabled or unemployed 4 2 At least one child 16 17 showed good interinvestigator agreement. To guarantee rigorous data, all steps of the analysis were discussed and validated by the research team, but the participants did not provide feedback on the findings.
COREQ (COnsolidated criteria for REporting Q ualitative research) Checklist (File S1).  Table 2. Information on each dyad is in Table 3.

| Dyad interviews
The analysis revealed 4 main themes: the disease 'lived' together (new role of the relative, communication around the disease within the dyad), impact of the disease on the relationship, social impact of the disease on the dyad and shared difficulties (social isolation, difficulties in having plans, worries for the future), and difficulties and needs of the relative.

| Disease lived together
In the present sample, dyads coped with the disease together and described the relationship of partners as complementary and knowing.

New helping role of the relative
To live the disease together as a 'working team', the partners (n = 19) explained the new helping roles of relatives. The most common role of the relative was to provide help in physical tasks, especially in activities of daily living (n = 10).
• • 'So that is, he is going to help me in managing the home, also, for laun- Understanding and mutual support, preventing the patient from the feeling of being a burden was also mentioned (n = 2).
• Relatives were sometimes (n = 5) described as positive and acting as a driving force. They then became 'family responsible'. Relatives highlighted that support and help was normal (n = 2), and one relative thought that the term caregiver was not appropriate and that a caregiver was a foreigner not close to the family.
• 'What bothers me is, he is afraid to bother me.' (R2) • 'In "caregiver," I find this is too much, because, as a spouse, I found this is normal. "Caregiver," I've got the feeling that this is someone foreign…' (R18)

Communication around the disease
Dyads explained reasons to talk or not about the disease. In total, 14 dyads explained that they usually do not talk about the disease. The first reason mentioned was to try to forget it and not to focus on it (n = 9).
• Sometimes they preferred not to talk of something that is difficult to accept (n = 1).
• 'We try to withhold a little bit, because, he does not really accept it Not talking also respects the need of the patient to be alone (n = 3).

• 'When he has a lot of pain, he needs to be alone a little bit. I know him, so…I leave him in his corner.' (R8)
Not annoying others is also an important reason (n = 4).
• A patient also highlighted how asking for help was difficult.
• 'To apologize all the time, not to dare asking…to learn to accept to ask things, yes, I think this is that also.' (P13)

| Impact of the disease on the relationship
Most dyads (n = 16) did not feel the IA had changed the relationship.
• 'It has changed our way of living, yes, definitively. But not our relation-
• 'For us, we have become closer, anyhow.' (P13) • 'We have become even more close. We try to spend more time together, to do more things together than before. We know we are closer than we were before.' (P7) • 'There is gratitude with respect to the couple' (R7) However, if they were positive regarding the dyad relationship, they also were aware and acknowledged some tensions because of the disease (n = 14). Nine dyads considered that the disease received too much attention in the relationship.
• 'And then a feeling of invasiveness, I think of the disease.' (R13) •

| Difficulties and needs of the relative
Difficulties and needs of the relatives were rarely raised during dyad interviews. Knowledge of the disease and the patient's symptoms were an important need expressed by relatives (n = 10).
• Sometimes the disease and its consequences were not well accepted by relatives (n = 5).
• 'Sometimes, I am tired anyway and he doesn't really want to acknowledge it.' (P5) • 'I had someone dynamic, sparkling, but some days, she is at "2 miles an hour." I say to myself, wait, it is not helpful to run, she won't follow.' (R16) Relatives mentioned that not being able to help was frustrating and finding the right way to help and the right balance to provide help or not was not always easy (n = 5).
• 'We face some depressive situations, not being able to help, not having the right gestures, not being able to have the right attitudes. It is quite difficult to live that with a relative.' (R16) Relatives were conscious that they should not help too much (n = 3).

• 'We don't have peace of mind. When she is alone at home. If she falls, she can't get up. It is a problem. It worries me.' (R11)
• 'I felt responsible for everything that happens.' (R3) • 'I was not conscious, some people…I understood they were close, but I didn't understand they could worry for me.' (P13)

Social isolation
Eight dyads expressed the feeling of social isolation. Going out or entertaining at home was difficult because of the disease symptoms.
Because dyads cancelled several invitations or did not often go out, they felt they were forgotten. Sometimes this isolation was because patients needed to be alone (n = 3).

• 'When he is in pain, he needs to be isolated a little bit.' (R6)
Invisibility of the disease could also create misunderstandings and be a reason to feel socially isolated (n = 9).
• 'Which is difficult is that, this is a disease, you don't see.

Difficulties in having plans
The unpredictability of the symptoms made it difficult to organize daily life, and plans had to be modified or cancelled (n = 9).
• 'Because, we say to ourselves, if we make a reservation somewhere,

| D ISCUSS I ON
The current qualitative study offers new insights into understanding the perception of patients and relatives of their shared life with IA disease and their new roles and interactions and is a first step to develop interventions to support them. The relative can endorse a role of emotional support. He/she can be supportive, understanding and act as a driving force while preventing the patient from feeling that they are a burden. Preventing the feeling of not being a burden despite the impact of the disease on the dyad's everyday life was important for many participants.

| To live the disease together as a 'working team'-dyads explained the new roles of the relative
Protecting the relative's feelings was also important to the patient.
In one dyad, the patient did not want to talk about her disease for fear of annoying her relative, and the relative was annoyed because she was afraid to bother him (dyad 2). Emotional support is less visible than other assistance tasks but is of primary importance in IA.
In long-term conditions in general, emotional support helps patients not to feel cared for and maintain their perception of independence and identity. 31  and 'focus together on the good things in your life'. 35 These different themes were all addressed by our dyads during interviews. Relatives can also help in the search for information. We did not especially investigate the distribution of the search for information within the dyad, and when this topic emerged, it was only to mention that the relative was responsible for managing the information. However, Mazanderani et al showed that when one member of a couple (eg the patient) avoided or ignored information, the other usually compensated by taking on the responsibility of managing information.
Therefore, understanding the disease is viewed as a shared rather than individual concern. 17 The last idea of the roles of relatives is that for relatives, support and help is something normal. They found the term 'caregiver' inappropriate ('this is too much') and minimized their role, comparing it to caregivers of more dependent patients. This was also the case for Knowles et al The relative role of patients living with a long-term condition was described in terms of familial responsibilities but not 'caring work', 31 and relatives had difficulties identifying themselves as carers. 31 In another study, some family members of patients with multiple sclerosis explained that their caring function was included in their relationship with the patient. They also reported fears of threatening the identity of the patient when they were designated as carers. 31

| Dyads explained reasons to speak or not of the disease
The first reason to avoid talking about the disease is to try to forget it and not focus on it. Partners tried to affirm that life is not only the disease. This coping strategy can be used in interventions. For example, one of the positive results of an emotion-focused group intervention for patients with rheumatic disease was that in focusing on topics related to life rather than disease, patients had the feeling of being recognized as more than the disease. 36 From patients' perspectives, the willingness to avoid disturbing others is an important reason for not talking about the disease.
Beyond the willingness to avoid talking about the disease, patients often struggle to hide difficulties and fulfil their own and other's expectations. 36 They also feel guilty if they have to say no and try to avoid such situations or push themselves too far. 37 Patients who recognized the importance of talking to someone about the disease prefer to talk to other people with arthritis or health professionals because they do not want to bother family or friends. 37 However, not talking about the disease should also be agreed

| Difficulties of the relative
A good knowledge of the disease is an important need expressed by relatives. As in the Matheson et al study, partners wanted a joint approach to treatment involving and recognizing the partner and focusing on the couple rather than just the patient. 10 One relative explained that he was responsible for searching the Internet.
Difficulties of relatives were seldom raised by dyads. However, difficulties in providing help were mentioned: first, because relatives felt helpless when they were unable to support the patient; and second, because finding the right way to help and the right balance to provide help or not is not always easy. For example, spousal support can increase depressive symptoms in patients expressing a high importance of completing activities independently. 42 Relatives also can be frustrated with not being solicited. To assume a role of support is also part of the relative's identity and responsibility, and this needs to be valued and recognized inside the dyad. Taking care of others can also have emotional, physical and social benefits, leading to increased happiness and increased sense of social connectedness. 43

| Social impact of the disease on the dyad and shared difficulties
Social isolation is an important concern. One dyad described the social impact of the disease as 'a restricted life'. Partners reported they had given up recreational shared activities and had difficulty making future plans. 10 The study has some limitations. First, the sample was not representative of all dyads of individuals with IA in that our dyads were motivated to participate because relatives were already involved in the management of the patient's disease. However, they acknowledged some tensions, and the interviews informed on the coping strategies they used. The mean age of the sample was high (only six patients and nine relatives [20 patients/20 relatives total] were under 60 years old), which can also affect the results. Second, difficulties of relatives were not much developed by the dyads perhaps because relatives were invited by the patients and they put aside their problems. Finally, we do not have any data on refusal to participate for the above reasons and because interviewing a dyad about their disease experience can be difficult for them and rheumatologists approached only couples or patients they knew and only when they believed this was appropriate. Furthermore, they never insisted when they felt the patient and the relative were not motivated.
However, one originality of the study is that dyads have rarely been interviewed together and they had the opportunity to explore themes, express their difficulties or mistakes or how they cope together.

| Implications for interventions
Dyads provided insight into the coping strategies they used. These findings can inform health-care professionals regarding the provision of care for couples who are coping with IA and can have implications for TPE ( Help patients express emotions; make them aware of their own needs, taking care of themselves and their health; work on how to assert their needs to other people, learn to say no and to release feeling of guilt and revise the requirement to fulfil too-high expectations.

Social impact of the disease on the dyad and shared difficulties
Try to find strategies to increase social participation and recreational activities deciding for them), respecting the patient's need to be alone or be a source of motivation • Improve cognitive-behavioural skills of both patients and relatives (eg coping strategies such as distraction, positive outlook and restraining negative emotional reactions and planning enjoyable activities) • Trying to find strategies to increase social participation and recreational activities or to deal together with the unpredictable nature of arthritis.

| CON CLUS ION
This study highlighted the importance of recognizing the role of the relative in the management of IA disease, especially when medical decisions are shared with professionals. A joint approach to treatment is a basis for coping with the disease. This supposes (a) discussions about relatives' new roles to delimitate and clarify them, (b) patients' communication skills (eg ability to express emotions and needs and to say no) and relatives' communication skills (eg asking whether the patient is sure they do not need help, respecting the patient's need to be alone or be a source of motivation) and (c) a good understanding of each other, which can be improved by providing information on the disease and coping strategies for both the patient and the relative.

ACK N OWLED G EM ENTS
The authors thank all the members of the Proxy-RIC team, especially Sophie Pouplin, Gilles Hayem and Nathalie Legoupille, for recruiting patients and Laurence Carton for discussions and insights into patients' perspectives and all participants who took part in this study. They are grateful to the Association Française de lutte Antirhumatismale (AFLAR).

CO N FLI C T O F I NTE R E S T
Financial support from Roche Foundation (unrestricted grant).

DATA AVA I L A B I L I T Y S TAT E M E N T
Data are available on request from the authors.