Participants

The inclusion criteria were as follows: heterosexual couples who had been living together for at least 5 years, in which one partner was at an early stage of PD evaluated by the Hoehn and Yahr stage (Hoehn & Yahr stages 1 and 2; [40, 41] and did not suffer from another neurological or psychiatric disease; PwPDs and their spouse who were aged between 40 and 80 years to avoid atypical and advanced forms of PD and to ensure their capacity to physically and cognitively communicate and to coconstruct their experience. These criteria were controlled by the referring neurologist of each patient before the proposition of the study.

The interviews were analyzed using the interpretive phenomenological analysis (IPA) method developed by Smith et al. [42]. For this method, the literature recommends a small number of participants, ranging from 1 to 20, to master the whole corpus of data. We chose a sample of heterosexual dyads to ensure homogeneity of the sample.

Table 1 shows that for 8 of the 15 couples who participated in the study, the PwPD was a man. The mean age of the PwPDs was 58 years (SD = 10.04), and the mean age of the partners was 59 years (SD = 11.19). The average length of time since diagnosis was 1 year (SD = 0.64). The mean duration of the couple relationship was 36 years (SD = 9.62).

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Table 1. Characteristics of couples.

https://doi.org/10.1371/journal.pone.0294240.t001

Procedure

The couples were recruited from October 2018 to December 2019 through the Neurological and Movement Disorders Department of the Lille University Hospital (France). Couples who met the inclusion criteria received an information letter accompanied by an oral explanation of the study by the patient’s referring psychologist or neurologist. With the partners’ agreement, they were called by interviewers, and the first appointment was scheduled to take place at their home or at the hospital. Before the interview began, each partner was required to sign a consent form. Separate semistructured interviews with each partner were conducted simultaneously. The dyadic approach is an interesting way of highlighting commonalities and differences between what each partner experiences and their disagreements. The topics dealt with the partners’ individual experiences with PD, the couple’s history, the impact of the diagnosis on the functioning of the couple, and the partners’ projections for the future (see Table 2). The PwPDs’ interviews lasted an average of 60 minutes (SD = 11.62), and the partners’ interviews lasted an average of 66 minutes (SD = 13.45). The interviews were recorded using a voice recorder and transcribed in their entirety. Pseudonyms were used to designate the participants, with the same initial given to both partners within a couple (e.g., couple A: Aurélie for the PwPD and Adrien for the partner).

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Table 2. Interview grid.

https://doi.org/10.1371/journal.pone.0294240.t002

Ethical issues

The study was approved by the National Ethics Committee (Committee for the Protection of Persons, CPP Est IV, IDRCB 2017-A0261152). The team of the Lille University Hospital that recruited the participants (KD, BF, LD) had the names of the participants but could not make the link with the anonymised interviews. The researchers who conducted the interviews (EC, EB, CS, CM) had access to information that could identify participants during data collection. The other authors (EW, PA, GB) did not know the names of the participants and only had access to the anonymised interviews.

Data analysis

The purpose of this study was to report the experience of couples confronted with the PD of one partner in the early stage. IPA permits access to the participants’ subjective experiences, the meaning that they attributed to a given phenomenon, and the psychological processes [42, 43]. The interviewers, psychologists experienced in clinical interviewing and IPA, were aware of the impact of their subjectivity in this type of analysis. They therefore adopted a reflexive attitude, putting aside their knowledge and assumptions about the participant’s experience [44].

According to our research question, the two partners of the couple are concerned with research with a shared and distinctive experience. For this reason, data were collected following a multiperspective design [45]. The interviews were conducted separately with each partner to allow access to more honest and intimate information without fear of hurting the other partner regarding one’s experience of the disease and one’s view of the couple dynamics.

Following the recommendations of Nizza, Farr, and Smith [46], each interview was analyzed and interpreted by two researchers. They first analyzed each interview individually. The IPA is based on the coconstruction of meaning by the researcher and the participant. During the interview, the participant makes an interpretation of his or her experience. The researcher then analyses the transcript of this interview line by line, focusing on the vocabulary and expressions used by the participant to describe his or her experience and emotions. These salient elements enabled the researcher to access the meaning of the experience for the participant and his or her psychological mechanisms, which were then schematized by the researcher. This double hermeneutic allows the researcher to delve deeper into the participant’s discourse by putting aside his or her presuppositions about the participant’s experience. The two researchers then shared and discussed their analyses conjointly to enable reflexivity and to prevent potential bias of their own opinions and feelings. They explored the experience of each partner, and they considered the two interviews of each couple together to understand the convergences and differences between partners. These steps were repeated for all 15 couples. At the end of the 15 analyses, the researchers highlighted the salient individual and dyadic phenomena to synthesize the experience of couples confronted with the PD of one partner in the early stage.

Being tested by the diagnosis

At the early stage of the disease, the arrival of the first signs of disease is a source of concern more or less shared by both partners. Individual and dyadic adjustment capacities are asked for after the diagnosis according to four configurations: noncongruent (couples B, H, I, M, N, and O), collapsed (couples A, C, K and L), relieved (couples F and G) and avoidant (couples D, E and J).

The "noncongruent" configuration, characterized by noncongruent experiences between the partners, is well illustrated by couple O. For Olivia, the first signs of disease worry her, and she quickly seeks information to understand what is happening to her; she then communicates this information to the more distant and skeptical Oscar. She feels some frustration but interprets Oscar’s reaction as part of a necessary time to increase his awareness of the disease. This proactive approach helps prepare her to receive the diagnosis, whereas Oscar receives the news of the diagnosis abruptly, feeling thrown into an uncertain future.

My wife, who was certainly more worried about her health than I was, had already looked into the networks, into other things […]. She had come across Parkinson’s disease […] So she waited for confirmation, which was almost a relief because she was afraid to know if it wasn’t something else. For me, it had the other effect, i.e., a snowball effect. I became afraid […] it’s things that we can no longer control.

(Oscar, partner)

I had a slight suspicion, having looked at all the symptoms and finding that I had 80% of them. But when we found out, it’s true that he cried quite a bit.

(Olivia, PwPD)

The spouse who has more resources may then become a support for his or her partner, for example Béatrice: "I pull him up […] like a puppet. I say ‘come on, come on’”.

For the "collapsed" configuration, illustrated by couple C, after a reaction to the first signs that are more or less shared by both partners, the diagnosis provokes an individual emotional collapse followed by dyadic recovery. At first, the partners withdraw into themselves and then very quickly find themselves united in minimizing, relativizing and reassessing the situation, relying on the couple as a resource.

A sledgehammer blow…For a week, I didn’t dare talk to him about it; he didn’t talk to me about it. From time to time, we’d say a word, but it didn’t last any longer. We took it upon ourselves; we talked about it together, and then we said, “Come on. We’re both here. We’re both going to do what we have to do.”

(Cathy, partner)

For a week I was put on anti-anxiety medication […] I was feeling down, I thought, “This is it; it’s over […]” Likewise, she took the brunt of it for a week, and then after that… she’s not the type to let go… we’re going to fight.

(Cyril, PwPD)

For the "relieved" couples, illustrated by couple G, the first signs are associated with other illnesses in the family history, causing strong anxiety in one or both partners. The fear of being confronted again with difficult situations is a source of tension in the couple. Nevertheless, the diagnosis of PD, perceived as less serious than those illnesses already encountered in the family, is a source of relief for the partners and reduces these tensions.

His mum wasn’t diagnosed with Parkinson’s; it was Alzheimer’s. But I can still hear the sound of my mother-in-law’s slippers walking, and it reminded me of that, and it made me tense up every time…! […] I was afraid to live like that.

(Géraldine, partner)

Sometimes she was a bit annoyed by my memory lapses, by the fact that I would start a sentence and not finish it.

(Gilles, PwPD)

In ’avoidant’ couples, both partners are more or less aware of the first disease manifestations, but after diagnosis, both partners put in place or reinforce strategies to fight and avoid the disease. At the individual level, the partners may question the diagnosis, and the PwPD actively compensates for the symptoms to make them as invisible as possible. At the dyadic level, these efforts are accompanied by a lack of communication about the disease. This dynamic hinders the partners’ awareness and adaptation, as witnessed by couple D, and is a source of tension and misunderstanding.

I wasn’t even sure if it’s PD. He says no […] he never really told me he had Parkinson’s.

(Doriane, partner)

Even now, I think I realize only a little bit… or I don’t want to realize.

(David, PwPD)

Talking about everything except the disease

The majority of couples describe themselves as open and communicative about family life, decisions to be made and adaptation to daily life. On the other hand, everything concerning the disease, from the diagnosis to the symptoms and their psychological repercussions, is the subject of more subtle communication at this early stage between respect for intimacy, protection and unsaid.

Supporting each other

Most couples describe themselves as being united and cohesive in the face of disease, and some draw parallels with their unity during previous life events, e.g., miscarriage, disease, financial problems or death of a relative. Nevertheless, the couples differ in their level of harmony in managing daily life and symptoms.

The experience of the first signs of disease and the diagnosis

Our results highlighted four configurations according to individual and dyadic experiences and adjustment following the first signs of disease and the diagnosis: "noncongruent", "collapsed", "relieved" and "avoidant". For "relieved" couples, the tension that emerges with the first signs of disease is relieved with the diagnosis. Previous studies have already pointed out that the diagnosis may be a source of relief by naming the condition causing the symptoms despite anxiety about an uncertain future due to the degenerative character of PD [37]. In the case of "avoidant" couples, diagnosis quickly leads to avoidance and struggle, consequently restricting communication about the disease. This lack of communication leads to tension and misunderstanding between both partners. Manne et al. [47] showed that mutual avoidance of discussing disease-related issues is associated with higher distress for both partners and with conjugal dissatisfaction. For "collapsed" and "noncongruent" couples, anxiety following the diagnosis is linked to a feeling of loss of control, powerlessness and uncertainty. The support that partners give to each other enables them to find the means to adjust individually and as a couple.

Communication about the disease

The results showed that the majority of couples describe communication about daily life to be very smooth but communication about their experience of the disease to be much more difficult. Indeed, disease-related communication in couples is not always equivalent to general intracouple communication [48].

The majority of participants in this study prefer to keep their feelings to themselves and try not to show what they feel out of pride or to protect their partner. They then externalize when the partner forces a dialog, either when they are alone or when they are outside the conjugal sphere. However, it has been shown that clear and open communication about the disease is important for both partners’ well-being and permits successful management of its biopsychosocial effects, while avoidance and holding back thoughts and emotions are associated with poor outcomes for both partners, including lower relationship satisfaction and greater distress [17, 47–51]. Perceptions of communication about the disease should be assessed by clinicians with the Couples’ Illness Communication Scale (CICS) soon after diagnosis. This assessment would allow the referral of early communication interventions, such as the Early Diagnosis Dyadic Intervention (EDDI) program developed by Whitlatch et al. [52] adapted to PD, to prevent disease-specific distress in the long term [48].

The results also highlighted that in an effort not to worry or annoy others and not to appear fragile or less efficient, some PwPDs decide not to talk about their disease to their relatives, which leads them to control their symptoms in public or to adapt to situations. Indeed, PwPDs fear losing their jobs, being stigmatized, being embarrassed, being treated as ill, and being perceived as incapable, which can threaten their sense of identity [17, 53]. They thus attempt to show others and themselves that they are still capable of performing tasks, try to hide shaking from others, often without success and avoid social interactions. Fostering better acceptance of the disease would allow PwPDs to reduce their struggle against the disease and help them be able to better express their needs in terms of assistance from their spouses so that they can better adjust.

Moreover, spouses understand and respect the decision of PwPDs not to talk about the disease. However, this prevents the family or professional environment from adapting to the disease (demands, activities, etc.). Spouses are also placed in the uncomfortable position of having to lie or not being able to confide in family and friends about their experiences. Family mediation sessions may be encouraged to open discussion with family, help other family members gain a better understanding of the disease, and assess available support [54]. Indeed, when PwPDs talk about the disease openly with their family and friends, they often receive real emotional support and more attention and kindness.

Dyadic support

In the face of this adversity, the different ways of giving and receiving help can either bring the two partners closer together or create tension. Martin [53] and Vikström et al. [55] already showed that in the face of disengagement from activities by PwPDs, the closeness of caregivers can sometimes be an asset to the relationship and a catalyst for the closeness of both partners. Coping with the challenges of the disease allows partners to affirm their mutual commitment to each other and consolidate their relationship [17]. This study also showed that adversities encountered in the relationship history have bonded and strengthened the couple. The disease is then perceived as an additional event that the partners must go through together as a couple. Previous studies on cancer have shown that couples who conceptualize a diagnosis as a “couple stressor” have better marital adjustment than those who see it as an “individual stressor” [56, 57]. ‘We’ awareness may be considered a protective factor for conjugal adjustment to the disease. A three-step process designed by Skerrett [57] may be proposed to couples with an ‘I’ awareness to build and nourish a “we” awareness. In the first step, couples may be supported to build a "we" awareness; in the second step, couples may build awareness of the disease history of each partner; and in the third step, couples may serve to nourish and reinforce the "we" as a resource.

Nevertheless, support is not always easy for PwPDs to accept. PwPDs may find that their spouses become more attentive and anxious with the diagnosis, whereas they want to preserve their independence, sometimes to the point of not listening to themselves and pushing their own limits. This struggle with symptoms can cause greater fatigue and, in turn, an accentuation of the symptoms, which worries spouses. Indeed, spouses are aware of the identity issues of PwPDs but worry about health consequences, and they feel powerless [53]. This worry may lead spouses to make remarks, supervise, monitor or try to set limits for PwPDs, which can be a source of tension. Support is then perceived as a hindrance to PwPDs’ involvement in daily mutual commitments [55], sometimes giving PwPDs the impression of being infantilized or capitulating to the disease. Therefore, partners may be faced with the dilemma of supporting their partners without threatening their sense of independence and contributing to a feeling of being controlled or infantilized. This dilemma is especially constraining since it is not always easy to find a compromise between helping and not helping [11] and to know when PwPDs want to act independently and when they want help [53] since the perception of symptoms, abilities and help is sometimes different between the two partners [49]. It would be interesting to support spouses in better adapting their helping behaviors to the PwPD’s symptoms, using more encouragement, modeling, and reinforcement, and supporting PwPDs in their own choices. Moreover, communication about the disease would be increased, and discussions about how to cope with daily activities would be encouraged to make joint decisions. Such support would promote a sense that both partners are working together to cope with the disease [58].