The findings portray spouses’ experiences of living with a partner suffering from NCCP. Three categories and nine subcategories were identified. The categories were: “a feeling of being neglected”, “a tension between the hope and despair”, and “a threat to ordinary life” (Table 2).
Table 2
Category | Subcategories |
A feeling of being neglected | Being disregarded by healthcare professionals |
Being kept out of the loop by one’s partner |
A tension between hope and despair | Keeping the faith |
Being compassionate and supportive |
Being unprepared to deal with chest pain |
Being frustrated |
A threat to ordinary life | Everyday tasks and economic challenges |
Diminished leisure activities |
Challenges to the couple’s relationship |
A feeling of being neglected
This category contains two subcategories portraying the spouse’s feelings of “being disregarded by healthcare professionals” and “being kept out of the loop by one’s partner”. The subcategories describe the feeling of being ignored and excluded by professionals and feelings of being kept out of the loop by one’s partner.
Being disregarded by healthcare professionals
Experiencing being excluded by healthcare professionals was commonly expressed by the spouses. They felt that healthcare professionals very often did not invite them to participate in the dialogue regarding the care of their partners. They described a feeling of not being acknowledged by the healthcare professionals, even when they sat beside their spouse. Spouses did not always receive answers on their questions or received short answers without a contextual description. Moreover, they experienced that they did not receive important information when they were unable to be present during visits at the hospital. When the partner later tried to recall what the doctor said about the state of health, they usually only shared a part of the information, which made it difficult for the spouses to grasp the entire situation. Spouses shared concerns that although they are expected to play an important role in their partner’s healthcare and treatment, they are seldom involved in the plan or invited to participate when the information is provided.
“I absolutely believe that as a family member, one should have the right to meet someone [...] who could talk to me and say, 'Okay, you are in this situation now, and practically you could do this, this, and that, which could help him and in the long run, you as well.’” (4)
Being kept out of the loop by one’s partner
Spouses experienced that the partners did not want to talk about their chest pain. Their partners were perceived as not wanting to worry their spouses, and therefore often kept quiet about ongoing chest pain. Sometimes their partners talked about the pain episode afterwards, but mostly they kept it to themselves. However, spouses experienced they could feel when their partner was in pain. Body posture, facial expressions, impaired breathing, atypical movements, or sudden rest could reveal ongoing chest pain. Usually, the spouses choose not to show when they observed their partner was in pain and just waited it out.
“I almost feel guilty that she hasn't said anything like that, so maybe I should have taken better care of her and asked a little more than I usually do.” (3)
The participants did not talk about the iCBT program in which they were participating. Spouses were aware of that their partner was working with the iCBT program, but they rarely knew or had any details about their progress. They saw their partner sitting down in front of a computer or tablet when working with the program or going out to exercise. However, the spouses felt that the partner wished to manage the program in private. Some spouses experienced that their partners became annoyed when they received questions about the program or comments about their work effort. Commonly they wanted to know more but did not want to insult the partner’s integrity.
“I was surprised when he said he had been involved, and I said, 'That's great,' and then someday I stood there reading something while he was on the computer and said, 'But you haven't answered these things,' and he replied, 'No, I haven't had the energy or felt like doing that' Then I noticed it was about some gymnastics, 'Did you do it?' 'No' 'Why not?' And he didn't answer, and then I asked again, and he just got annoyed so no, I don't care, so I stopped asking, and then I left.” (7)
A tension between hope and despair
This category contains four subcategories: "keeping the faith," "being compassionate and supportive," "being unprepared to deal with chest pain", and "being frustrated." The subcategories described mixed feelings of faith, compassion, and support; the feeling of being unprepared to deal with the chest pain; and frustration with the situation, as described by spouses.
Keeping the faith
Participants described that leaning on hope and faith to get through challenges had become a way of dealing with worries related to partners' chest pain. Spouses believed that all visits or treatments happened for a reason, and were necessary. They believed that the sacrifices they made, such as accompanying the partner during late night visits to the emergency department or cancelling their plans, were necessary, even if they felt demanding. Spouses described not regretting the relationship with their partners, despite challenging times and difficulties in life. They believed and hoped that the challenges would strengthen their relationship. A vision of a life without their partner made them appreciate the relationship even more. Another way was to accept not being able to affect their partner’s chest pain, and thereby feeling confident and less worried. However, it was challenging to deal with their partner’s chest pain when hope was taken away.
"I hope so, and I also believe that she believes or feels the same, because as I said before, she has the will and determination. If she didn't have hope, she might have given up a long time ago. And I believe that if one can do this with movement and perhaps exercise and such, then I think there can be hope.” (6)
Spouses spoke about the benefits of gaining strength from religion. Laying their worries over their faith gave them relief and helped them manage their fears. Praying made participants feel as if they were making an effort, which counteracted feelings of powerlessness. Furthermore, thinking ‘positive’ and hoping for the best was also a way to get through pain and worries.
“I have a belief in higher powers, so it was natural for me to seek help from above [...] It provides comfort, and it gives someone to share the burden with, so it's calming in its own way. Somehow, it gives you the feeling that you're doing something, even though you can't directly explain its impact. But it definitely has a calming effect.” (3)
Being compassionate and supportive
Spouses expressed that feelings of empathy and compassion were important in their relationships. The impact of pain and anxiety on their partners’ lives was obvious to spouses. They witnessed all the sacrifices their partner had made and saw their struggle to get help and feel better. They felt sad for their partners and all the life-limiting situations they were experiencing.
“A typical situation is when we're about to go to bed, and she sits there and usually reads something in the evening, and then she becomes anxious, and then I understand, 'Oh, it's this again.' And then I try, we talk about it, how does it feel, and we try with closeness and comfort, and that can take an hour or two.” (8)
Spouses were compassionate and cared for their partners by encouraging them to rest and by freeing them from daily tasks. In the case of chest pain, spouses supported their partners’ decisions on how to manage the situation. Sometimes decisions regarded seeking advice from healthcare workers. In other cases, it was enough for the spouse to be calm, rational, and present or to take a step back and give the partner space to manage their pain by themselves.
"I'm supportive, actually, and I can understand certain situations, but I don't try to influence or stress him out, or force him.” (9)
Spouses did not want to interfere their partner’s participation in the iCBT program despite varying involvement. They expressed being positively surprised when their partner talked about their participation in the program, because it confirmed that they were aware of the impact chest pain had on their life and showed a wish to change. Although they did not ask as much about the program, they encouraged and supported when their partner was working on it. Spouses could not always determine whether it was the content of the program that promoted changes in their partner´s behavior, however participation in this iCBT program was seen as positive and hopeful.
"Yes, but she also seeks what could be, and I believe she has learned a lot from being in the program about herself and about chest pain. She searches for a lot of information on her own when it comes to this and that regarding pain. So, she has learned a lot, everything is positive. Anything that improves is positive. I don't know what else to say, but it's positive.” (6)
Being unprepared to deal with chest pain
Spouses felt unprepared to manage the situations when the partner was affected by chest pain. This was due to a lack of explanations for the cause of the chest pain. They also received opposing recommendations regarding chest pain management. Spouses wished they could get counselling or training in pain management and deal with worries caused by chest pain. They asked for knowledge that could help them be supportive of their partners. In addition, they also wanted the opportunity to ask healthcare professionals their own questions.
“Some kind of guidance might be helpful for family members, like ‘if you're a family member of a person in that situation, think about this and that.’ So, some type of knowledge that can be helpful, but exactly what it entails, whether it's about reading something online and getting tips from a web link, or if it involves regularly seeing a psychologist or seeking counseling, and so on, it feels highly individual on my part, because I don't know what would be right or wrong.” (3)
Spouses felt confused and angry when witnessing their partners suffering from chest pain. Not being able to help or have anyone to contact made them feel abandoned and left them feeling like they were in a position of liminality.
"Many times, I have sat and listened to ***** and felt so frustrated, thinking, 'What can I do as a relative?' Sometimes, I feel like I just wanted to, even though I know it's not possible, pick up the phone and say, 'Come on, let's have a meeting, let's talk because this isn't right. Why not just do it properly, check what you know and can check, so we can move forward because our whole family is stuck in neutral'.” (4)
Being frustrated
Spouses shared the impression that their partners were not being taken seriously, were referred to different healthcare providers and received unplanned and poorly coordinated care. Some spouses described anger towards healthcare professionals, who were unable to diagnose and treat their partner’s symptoms. Moreover, they also experienced disappointment when healthcare was delayed, and when their partner’s chest pain was ignored. They described feelings of powerlessness and felt burdened by their partner’s disappointment. This frustration also arose when they experienced a lack of strategies to manage their partner’s chest pain, anxiety, and feelings of vulnerability. Spouses sometimes felt frustrated that their partner did not always share the same view as them, and felt as if a burden were laid on their shoulders. The anger also stemmed from not being able to plan their own life, as the partner´s chest pain could unexpectedly appear at any time. Spouses felt frustrated that the chest pain had such a substantial impact on their family’s lives. All in all, the frustration caused by this situation made the spouses feel hopeless and drained of energy.
"I becomes very dejected, just this feeling of 'what am I doing, and how long will it be like this, and how should I think?' The emotions become very negative, and it's challenging to maintain a positive spirit, I think [...] Besides the anger and frustration towards the healthcare system, you become tired, you don't have the energy anymore. I don't know if it's because you worry and need to question so much, but emotionally, it has affected me in a way that I have felt low and depressed, and sometimes I get angry at *****. He can't help having pain, but eventually, it becomes like a burden in some way.” (4)
Spouses felt expectations were placed on them, even if they were not always stated explicitly; expectation which could come from their partner, relatives, healthcare professionals, or from themselves, which made them feel frustrated. Some of the expectations regarded practical home tasks such as cleaning and shopping, and coordination of contacts with healthcare professionals. One of the most demanding and frustrating expectations spouses felt was conveying an understanding and empathic attitude towards their partner.
“The expectations from [him] that one should understand it, are difficult. I mean, to understand how he feels, both in terms of his pain and how he feels in the whole situation, it's quite challenging because, well, it's really difficult, because you primarily prioritize your own perspective first of all” (4)
A threat to ordinary life
This category contains three subcategories: “everyday tasks and economical challenges”, “diminished leisure activities” and “challenges in couple relationships”. These subcategories describe participants’ experiences of changes caused by chest pain and their negative impact on different aspects of their lives, such as everyday life and economy, leisure activities, and couple relationships.
Everyday tasks and economical challenges
Spouses’ everyday lives were notably changed by the fact that the partners were limited in performing everyday tasks such as shopping, carrying bags, cleaning, and making efforts at home. In some cases, this was also supported by healthcare professionals, who urged them to refrain from strenuous activities, which spouses felt placed even higher demands on them. Spouses also experienced increased responsibility for the care of the children, as they felt the partner was not able to manage it, in case of chest pain.
"I'm afraid of not being there and being present if, for some reason, he doesn't feel like he can handle it on his own. And for my son, too, if ***** ends up in a state that he has no control over and my son has to witness it, that's the fear. And of course, I'm afraid that something might happen.” (4)
The financial situation was another concern affected by the partners sick leave or having to quit work earlier, due to chest pain. Spouses’ jobs were in some cases also affected by their partners’ chest pain, or when they needed to support or relieve their partner from everyday tasks. This led to poorer finances that could impact their living conditions, in terms of possibilities to restore the house, go on vacations, or to get insurance or a bank loan.
"It affects me when I have to travel for work. I may even hesitate, even if it's mandatory. My colleagues at work know the situation and I can take advantage of this and have a conversation with my boss.” (4)
Diminished leisure activities
Reduction of physical activity was pointed out by spouses as the biggest change in everyday life. Reduced movement and activity were experienced as related to episodes of chest pain, the fear of pain, or anxiety about the causes of pain. Physical activities that spouses had previously perceived as being enjoyed by partners were shortened and made less intense. Even their long joint walks were replaced by shorter walks or removed completely, which also affected spouses' everyday lives, as they also became more inactive and isolated at home.
"I do the heaviest tasks in daily care here, and then I try to encourage her to maybe go out for a walk. Somehow, I hope that movement will make things better. At least that's what I believe, so I try to accompany her” (6)
They expressed the importance of having their own activities and the opportunity to go out and leave difficulties related to chest pain behind. The spouses described the struggle to distance themselves from the chest pain and the consequences that came with it.
Challenges in couple relationships
Spouses experienced a changed relationship. They were on guard and prepared to handle the worst-case scenario, causing worries and anxiety over the idea that the partner suddenly could die and that life as they knew it could change dramatically. This was described as lying awake at night, anxious and listening to see whether their partner was still breathing.
"My life has been filled with so much worry, so much anxiety about how ***** is doing. There are times when I'm barely able to leave the bedroom, and I sneak in and listen. If I don't hear anything, I gently place my hand to feel if he's still breathing.” (1)
The fear of causing chest pain also led to a changed sex life and the relationship could transform from a desire for intimacy into camaraderie. The shift from being a partner to a caregiver changed the balance in the relationship. This was perceived as a threat because they wanted to be in a coupled relationship and not a caregiver to their partner. The spouses described sadness over not being able to socialize with others and do things together as a couple. They were aware of that the pain was not their partner's fault, however, they felt anger, since the partner let the chest pain control their lives. They also felt sad for being stuck in an undesirable situation. They needed a break from the chest pain and sometimes questioned staying in the relationship.
"There are days when you feel like it will never end, and then these feelings arise, like, should you save yourself and go, or should you stay.” (4)