Social consequences of advanced cancer in patients and their informal caregivers: a qualitative study

This qualitative focus group study was embedded within a larger study on quality of life and quality of care as experienced by patients with advanced cancer and their informal caregivers (eQuiPe study (NTR6584)), conducted in the Netherlands.

Patients were eligible for inclusion if they were diagnosed with colorectal cancer (stage IV and at least two metastasis in liver, peritoneum or lung), lung cancer (stage IV), breast cancer (stage IV with at least visceral or brain metastasis), prostate cancer (stage IV and castration resistant), non-resectable pancreatic cancer, or non-resectable esophageal cancer. Both patients and informal caregivers were eligible if they were 18 years or older and understood the objective of the study. An informal caregiver could participate regardless of patient participation and vice versa. Patients and informal caregivers were not eligible for inclusion if they had a poor expression of the Dutch language, they suffered from dementia, or they had a history of severe psychiatric illness.

Patients with advanced cancer and their informal caregivers were informed about the study by their treating physician to participate between January 2017 and June 2017 in six Dutch hospitals. The physician asked permission for a research team member to call the patient to give detailed information about the study, address questions, and invite them to participate. Subsequently, when patients and/or informal caregivers agreed to participate, they were invited for a focus group.

Participants were assigned to a focus group based on their availability, and patients and informal caregivers participated in separate focus groups to minimize response bias. A focus group was approximately 90 min and was facilitated by two researchers (JvR and LB). A moderator (JvR) asked the questions, probed, and made sure that all participants were heard, and an observer (LB) listed the proceedings during each focus group (supplement 1). Consecutively, all participants completed a self-administered questionnaire regarding socio-demographics. If participants were not willing to participate in a focus group, an individual interview was offered. Interviews were also conducted separately for patients and informal caregivers. Two patients only wanted to participate with their informal caregiver present during the interview. All focus groups and interviews were audiotaped. After data saturation was reached, no additional focus groups and interviews were organized.

All focus groups and interviews have been transcribed verbatim and analyzed with content analysis using Atlas.ti version 7.5.15. Two researchers (NR and JvR) independently coded a randomly selected transcript and compared results to evaluate consensus. Transcripts were coded by the qualitative thematic analysis approach [23, 24]. Data was analyzed by the open coding procedure [25]. The procedure to confirm uniformity across researchers was repeated four times during data analysis phase. Quotes reflecting social consequences as experienced by patients and informal caregivers were included in the further analysis. Two researchers (JvR and NR) clustered the subcategories to identify main themes. To illustrate important results from the analysis, quotes have been presented followed by an alphanumeric code in brackets where P = patient, C = informal caregiver, FG = focus group, and IV = interview.

Both patients and informal caregivers emphasized the importance of continuing life prior the cancer diagnosis as much as possible; to strive for normality. “What it means to me is that I want to live my life just as I used to. And I want to make as few concessions as I possibly can to changing the way of life that I had. [...].The only thing I would want to change about my former life, is to fit more nice things into the way I live now.” (P3-IV). Patients explained that normality distracts them from the dominant feeling of being a patient. Being able to do the same things also gave them a feeling of control, satisfaction, meaning, and social embeddedness. Many patients mentioned adding more fun activities to their life as a consequence of prioritizing and the urge to escape from the situation. However, some informal caregivers mentioned that patients interpreted going on holiday with their children as a farewell because the reason for initiating this activity was their advanced cancer.

Many informal caregivers were aware that they would outlive the patient, and some informal caregivers felt the need to invest in a life after the patients’ death. Informal caregivers often explained how hard it was to combine their caregiving role with other responsibilities such as work and social activities: “At that time I made a conscious decision to continue playing golf; it is something that enables me to clear my head, and that is extremely important to me. But it is difficult, because you are away for four or five hours at a time which is often rather too long for [PATIENT] […]At the beginning you stop going for a while. But I realise that if I don’t go…, you really need to make some time for yourself. You can’t be joined at the hip 24/7.” (C7-IV).

Patients’ diagnosis and treatments interfered with their social life by physical or psychological complaints and medical appointments, and they often missed out on social events and resigned or reduced their job. Patients also explained how society is rushing by, while they were struggling with the uncertainty regarding their limited life expectation. Some patients planned social events ahead regardless of their condition, while others put their social life on hold, as illustrated here: “And even if it is just a weekend away or something like that... but I do find it difficult, everything is difficult actually, we are now planning a few things... you do try some things, but I can’t promise anything because I don’t know where I will be up to after the end of March.” (P24-FG). Missing out on social events made patients feel socially excluded, as well as missing out on conversations about these events.

For informal caregivers, there were also major social consequences. Some resigned their job to spend as much time as possible with the patient, while others kept working as long as possible. Reasons for informal caregivers to continue working were financial pressure, satisfaction, and distraction. Many working informal caregivers mentioned that their career was on hold and that their professional functioning was negatively affected because their situation pushed them to their limits. Many found it difficult to continue work because they felt to be of more use at home. Others also mentioned that social relations were sometimes judgmental about continuing work.

Many patients explained how daily activities in life gained value, the cancer diagnosis appeared to change the perspective on daily activities: “Do you know what you never do any more when you are as sick as I am? You don’t just pop out to the shops on your own, or have a rummage in the bargain basement of a department store and end up buying a lipstick that you don’t really need. I miss that.” (P7-IV). One patient called it the “noise” or “playfulness” of life.

Some informal caregivers emphasized the increased value of social activities. However, most informal caregivers spend less time on social activities for multiple reasons: lack of time and energy due to the experienced caregiving burden, difficult to leave the patient due to feelings of selfishness, shame, worries, or being judged by others. Some also explained that social activities did not result in positive energy as it used to do. They explained how their current life did not feel as their own, and social activities became associated with freedom and self-control. Most patients stimulated their caregivers to engage in social activities: “It is very important to me that she continues to live her own life as far as possible. We do a lot of things together, but you don’t have to do everything together. If she fancies going to town to buy a new dress or if she wants to have lunch with a friend, although actually she doesn’t really want to go out and leave me. But I push her to go, I’m fine staying at home.” (P21-IV).

Patients and informal caregivers often explained how cancer has become central to their social identity. Conversations with social relations were often focused on the illness and its treatments: “It got to the point where I was beginning to find it rather strange to be the focus of so much attention, I felt like a freak or something; all of a sudden everyone wanted to know all about how things were going.” (P39-FG). Some patients were also troubled when random people would ask them intimate questions about their health status.

Informal caregivers emphasized that many social relations feel uncomfortable to address the patient directly. Informal caregivers received many cancer-related questions from social relations that were tiresome. Some mentioned that social events were often a burden to them because of the confrontation with people asking questions about their situation. “I don’t want to be the main attraction. Of course people look at you, and they do look at you. Or ask you things [..].There is always a moment of hesitation, although not with the inner circle if you know what I mean. It is more with those people who aren’t quite so close. There comes a time when you don’t feel always feel comfortable with it, or strong enough. Or you really don’t want to discuss it. You perceive it differently. It is a very serious business, not some light-hearted social occasion.” (C32-IV). As a consequence, some informal caregivers mentioned that going on holiday would temporarily relieve them from their new social identity because they would be anonymous there.

Many patients and informal caregivers emphasized that the patient’s appearance can be misleading because people often assume you feel good when you look good. Many patients and informal caregivers found it confronting when people complimented the appearance of the patient or spoke negatively about it. Some informal caregivers mentioned that patients were keeping up appearances, because patients did not want to feel like a burden to others. According to informal caregivers, this behavior of the patient misrepresented their situation and made informal caregivers feel misunderstood by social relations.

Many patients found it difficult that their social identity changed due to cancer. Some informal caregivers also said that they were treated differently by social relations since the cancer diagnosis. “I’ve noticed that most people, my really good friends, find it difficult to disagree with me. Do you know what I mean? They treat you with kid gloves. And I am the type who always says ‘Come on then! If you have a different opinion - come on, let’s talk about it! But nowadays they are very guarded, and not happy with me tackling things head on. It isn’t really helpful to me. So I invite them over and do it anyway.” (C32-IV). Many patients also mentioned feelings of isolation due to exclusion from conversations about events. “And people just don’t tell you things any more. Like accidently discovering that your brother has been to Italy. Then you ask them why they didn’t tell you, and they reply because you can’t go on holiday anymore and they thought it might upset you.” (P7-IV). Most informal caregivers mentioned that they helped their social relations to stop avoiding the patient and instruct them how to treat the patient and themselves. Some informal caregivers were very accepting towards socially awkward responses of their social relations, while others could not grasp the misconception of others.

Most patients and informal caregivers spoke about an increased importance of social relationships. For patients, social connectedness has been giving meaning to their lives and brought support and enjoyment, but this was hindered by experienced social exclusion. “My friend has been to Spain recently and I told her how much I enjoy hearing her stories about it. And she said, I know you do but I find it difficult – us enjoying ourselves sitting in the sun enjoying a drink in Malaga. I feel so bad for you because you can’t. And I told how upsetting it is when people just don’t tell you things any more. I can’t go anywhere myself any more, but at least I can enjoy it through you.” (P7-IV).

Most patients and informal caregivers mentioned that they had lost social relations and that their social network also unexpectedly had expanded simultaneously by new social contacts and re-establishing contacts. “They have eaten here, they have drunk here, they have got drunk here, they have partied – they did it all, and now it’s over. OK, if that’s the way you want it, that’s the way you’ll get it. Then again, I have been back in contact with my brother for the past two years, not every day though.” (P22-IV). Some informal caregivers said that they had less time to invest in relationships and to attend social events what has led to the loss of social relations. Both patients and informal caregivers also mentioned a decreased interest in superficial relations. Many patient and informal caregivers appreciated the increased transparency of their social network. They also mentioned an increased quality of certain relationships, supportive relations with healthcare professionals, and positive and negative changes in the relation between the patient and informal caregivers.

Most patients experienced more support than they had anticipated. Patients and informal caregivers experienced mainly practical support, and emotional support was less available. “I used to be able to do everything, clean the whole house. Unfortunately those days are over. But two friends come every week to clean, they have set up a cleaning club especially for the purpose.” (P4-FG). Many patients experienced a decrease in support over time. Contrary, most informal caregivers experienced an increase in support over time. “More people are beginning to ask me how I am, my colleagues too. The first three or four months nobody bothers to ask. Because the person who is ill gets all the attention.” (C19-FG).

Visits from social relations were sometimes burdensome, while other times, they were helpful. This depended on how social relations approached the situation. “I had a friend with cancer, I used to go and see her often and she always used to say that I came in full of life and ideas about we could do that day... it wasn’t always immediately gloom and misery. She said, she didn’t need anyone reminding her about that. It was so much better for her if someone suggested going out to lunch, or going for a walk or invited her over to eat with the family that evening. For people like her, these are definitely the best reactions to the situation.” (C21-IV). Some patients appreciated peer support, while others found it confronting because it made them feel like a patient. Many informal caregivers informed social relations about the patient’s status and instructed them how to treat the patient. Most informal caregivers mentioned that their mediating role was important for maintaining the patient’s supportive social network. Most informal caregivers also provided support to their social relations regarding the situation.

It is ironic that cancer is able to undermine the powerful resource of social relationships to cope with the illness, which may actually cause additional distress [42]. Empowering patients and their informal caregivers to discuss their feelings regarding social consequences may be beneficial. Suggestions to empower patients and their informal caregivers are via psychological support and by increasing societal awareness, via national campaigns or websites. Also, creating awareness among healthcare professionals regarding the social impact of advanced cancer is essential as they are able to address the topic, anticipate on social problems, and provide social support. Also, informing social relations regarding the impact of advanced cancer and effective support methods may empower social support systems and reduce feelings of isolation. Furthermore, a quantitative study should map the extent of social consequences among these patients and their informal caregivers.