Reflexive thematic analysis.

To explore what Dutch family caregivers shared online during the first wave of the Covid-19-pandemic, an inductive reflexive thematic analysis was performed as this method is suitable to find patterns across datasets [31, 32]. A constructivist-interpretivist approach was applied by MV (elderly care physician resident/researcher in palliative care, PhD) and HH (psychologist/researcher in palliative care, MSc), acknowledging and embracing the influence of their own background and experiences on the coding process and theme development. Besides approaching the data from different perspectives (medical and psychological), the researchers had different experiences related to the first wave of the pandemic that shaped their interpretation of the data. At the time, MV worked as a resident at a nursing home and was therefore, besides being aware of the patients’ and family caregivers’ perspective, especially aware of the healthcare professionals’ perspective. HH had conducted and analysed interviews with (bereaved) family caregivers of Covid-19-patients for a synchronous research project, meaning she had already obtained in-depth understanding of family caregivers’ experiences.

MV and HH first familiarised themselves with the data by going through the entire dataset and making notes and exchanging observations while doing so. Next, of each media platform both researchers coded several of the same media posts which they then discussed, developing an initial coding scheme with mostly semantic but also more latent codes. HH coded the remaining data items while keeping an analytic journal in which she noted observations and doubts which were discussed during regular meetings with MV. The coding scheme was adjusted and applied accordingly during the process of coding. When coding was completed, MV and HH first separately gathered thoughts on meaningful patterns of family caregivers’ experiences and then developed initial themes during a brainstorm session and follow-up discussions. The themes were further refined by discussing the themes’ narratives with the co-authors and by going back and forth between the themes and the raw data. It was aimed for the themes to tell a coherent, meaningful story, each with a unique central organizing concept [31, 32].

Quantitative content analysis.

To investigate family caregivers’ communicative intentions with their social media posts, all parts of posts that were coded thematically were simultaneously coded as part of the quantitative content analysis. Online newspaper articles were excluded from this analysis, as these were written by journalists, making them unsuitable for investigating family caregivers’ communicative intentions. A predetermined coding scheme was derived from Weigand’s speech act taxonomy [33]. Speech act theory, initially developed by Austin [34], considers peoples’ expressions not as mere utterances, but as acts that are performed with an intention, such as advising, warning or suggesting. Searle was the first to develop a taxonomy of such illocutionary acts [35]. This taxonomy was later revised by Weigand as she believed Searle’s taxonomy to be insufficiently applicable to real-world interactions [33]. Weigand assumes that people communicate with the intention to come to an understanding with others. Coming to an understanding can take on different forms which she aims to distinguish with her taxonomy. The main categories of Weigand’s speech act taxonomy are representatives, directives, exploratives, and declaratives. These categories and their subcategories are further explained in Table 1.

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Table 1. Weigand’s taxonomy of illocutionary speech acts [33].

https://doi.org/10.1371/journal.pone.0310624.t001

HH and MV coded 20% of posts on each social media platform separately. Discrepancies between assigned (subcategories) of speech acts were discussed until consensus was reached. Next, HH coded the remaining data items and kept an analytic journal containing doubts which were discussed during regular meetings with MV. The coding scheme was not subject to change during the process. For each post, it was registered which subcategories of illocutionary acts occurred.

Analyses were performed in ATLAS.ti software (versions 9 and 22) [36, 37] and took place between August 2022 and May 2023.

1) Being out of touch.

The pandemic and its restrictions put the family caregivers’ world upside down. Something fundamental was suddenly jeopardised: being in touch with their ill loved one. For family caregivers of patients residing in healthcare institutions, the visiting restrictions had a large impact on their relationship with the patient. Basic elements of their relationship such as spending time together and physical touch were no longer self-evident. Activities that were especially important as patients were in their last phase of life were out of the question, such as celebrating birthdays or holidays or a last family vacation. Initiatives were introduced to facilitate contact between family caregivers and patients (e.g. video calls and visiting booths with acrylic glass), but many family caregivers were left feeling out of touch nonetheless:

“Looking through the window and seeing they are thirsty and in pain. And you’re not allowed to help. You can’t hold their hand. Even though you are trained in providing care. What a horrible situation to be in. How are you supposed to tell them how much you love them?” (Twitter)

Even when visiting was possible, this feeling of being out of touch persisted as distance had to be kept and personal protective equipment had to be used:

“My mother-in-law was able to see him once after the lockdown. ‘I don’t know you, who are you?’, my father-in-law [who has dementia] asked when he saw his wife entering with a face mask.” (online newspaper)

As the patient entered the dying phase, some family caregivers were allowed to visit to say goodbye. Nevertheless, much valuable time had been lost before that causing the goodbye to feel incomplete:

“I haven’t been able to see my mother for six weeks. Yesterday, the doctor called me. That I should come without delay. She is dying. She looked at me but couldn’t say anything. Six weeks wasted. I will never hear my mother again.” (Twitter)

Others did not get a chance to say goodbye (in person) at all:

“I am sad and angry. Sad, because my father is terminal after having had dementia for many years, it’s only a matter of hours. I (and the rest of the family) can’t be with him to say goodbye because of the crisis that the #coronavirus has put us in. So, this is what saying goodbye to your father looks like now, through a video link.” (Facebook)

Being out of touch with their loved one as they were approaching end-of-life brought about feelings of guilt and falling short:

“I’m having difficulty sleeping as everything is still running through my mind. I also feel guilty because I was forced to abandon her when she needed me the most.” (Twitter)

Due to the visiting restrictions, family caregivers also became alienated with their role as caregiver. Some were used to actively contribute to the patient’s care which was now no longer possible:

“I looked after my father who has dementia 24/7 for two years. One week before Covid he was admitted to a nursing home. I haven’t been allowed to visit him for three weeks, despite having signed up as a volunteer to help with caregiving.” (Twitter)

Many family caregivers were now in the dark regarding the patient’s wellbeing. They had to rely on telecommunication with the patient, which for many was impossible due to the patient’s cognitive deterioration or digital illiteracy. In some cases, healthcare professionals could provide some information about the patient’s health and wellbeing, but for many that could not sufficiently replace seeing it with their own eyes and looking after the patient themselves:

“I used to visit my husband every day. I would lay out his clothes for the next day and put a handkerchief in his pocket. And now the nurses send me pictures (…). And I think: where is his watch?” (online newspaper)

Last, family caregivers were also out of touch with their social contacts. Some family caregivers wrote about their isolation resulting from the new set of circumstances:

“I try my best to avoid getting infected, but as a result I have lost all contact with the outside world (friends, choir). It doesn’t matter, I’m not complaining, because the most important thing is that HE survives!” (Forum)

One daughter wrote about the difficulty of not being able to support her mother while visiting her terminally ill husband:

“When patients are terminally ill, one person may visit once a day. Of course, that person is my mother. My mother whom I can’t hold and support while she is at my father’s bedside.” (Facebook)

After the patient’s death, support was also limited due to restrictions for conducting the funeral (limited amount of people allowed) and the societal lockdown:

“There you are, crying behind your laptop during the livestream [of the funeral] on YouTube. Covid destroys so much of what you care about.” (Twitter)

As reflected in this theme, family caregivers were out of touch with the patient, both as a loved one and as a caregiver, as well as with their social support system. This resulted in distress and sadness, which is addressed in the following theme.

2) Fear, worries and uncertainties.

Much of what used to be normal and self-evident became uncertain as the pandemic hit. This brought about many fears and worries for family caregivers. First, the pandemic disrupted care-as-usual for home-dwelling patients. Home care services were downscaled and facilities such as day care and meal services shut down. For some family caregivers, this resulted in experiencing more responsibility and pressure regarding their caregiving tasks, increasing their burden. Some were hesitant to move their severely care-dependent loved one to a nursing home with visiting restrictions. While taking care of their loved one, family caregivers experienced a great sense of responsibility to protect them from the virus. Limited intensive care capacity added to their concern regarding the consequences if the patient should get infected. Despite being as careful as possible, they could still contract the virus and infect their loved one, potentially causing their death:

“I am experiencing some mucus in my airways today. This is quite common because of my asthma. But this time it feels like, surely it can’t be… No fever, no sore throat, it won’t be that bad. But I’m getting more and more worried. Also for the people around me. (…). Most of all for my mother and stepfather. He is terminal, has cancer, and has had only one lung for years.” (Twitter)

The new set of circumstances made many family caregivers feel insecure regarding the best course of action. Family caregivers expressed doubts on whether they should visit and look after their loved one or instead should stay away to protect them:

“My father who has dementia lives in a nursing home, so my mother is at home by herself. What do I do? Not visiting my father is painful, but if I don’t visit my mother, she might not see anyone for months. A hellish dilemma.” (Twitter)

One family caregiver shared her dilemma whether her frail husband should undergo treatment:

“I think both scenarios aren’t good. Proceeding with the stem cell transplant will obviously make him very vulnerable to Covid-infection and complications, but what will postponing mean for his levels that have been reduced over the past 12 weeks?” (Forum)

Furthermore, family caregivers worried about their loved one’s wellbeing as they felt their loved one was being neglected in the healthcare institution. Some clearly noticed deterioration of the patient’s physical and emotional health:

“I was shocked after my first visit to my father in the nursing home. He looked untended, had long, painful toenails, long hair, and teeth were missing from his lower jaw.” (online newspaper)

Some mentioned improvement of the patient’s wellbeing as visitors were allowed again, adding to the conviction that the visiting restrictions had a negative impact on the patient’s health:

“My mother-in-law was ’pronounced’ to be in a terminal condition, we could visit her briefly every day. Now she is doing so ‘well’, that she is no longer terminal, and the visiting restrictions are back in place. Who can make sense of that?” (Twitter)

Last, many family caregivers worried about the very real possibility of not being able to say goodbye to their loved one. That would mean the patient would die without a loved one by their side. Some family caregivers also worried the patient would misinterpret their absence as disinterest:

“Sadly, I feel I wasn’t there for my wife when she needed me. Who knows what she must have been thinking? ‘Where is he?’ It wasn’t my fault of course, I wasn’t allowed in there, but she didn’t know that. So sad!” (Twitter)

In summary, family caregivers experienced many fears and uncertainties which related to the best course of action in caregiving, the patient’s wellbeing, and the possibility of not being able to say goodbye. Many family caregivers also experienced disbelief and anger as described in the following theme.

3) Disbelief, anger and resistance.

Common sentiments reflected by the online media posts were disbelief and indignation as family caregivers felt moral principles were afflicted by the restrictions. How could they be separated from the patient? How could it be acceptable having to make decisions about who could and who could not visit or say goodbye to a loved one or visit their funeral? Many shared the opinion that restrictions should be tailored to individual circumstances, especially when someone is approaching the end of life. Instead, the decision was made for them that patients should be protected from the virus no matter what. Meanwhile, many family caregivers felt that the resulting loneliness was more damaging than possibly contracting the virus, even if an infection would prove to be fatal to their loved one:

“I genuinely wonder whether the remedy isn’t worse than the disease. People may live a few months longer, but they are lonelier and more confused. That is some price to pay.” (Twitter)

Furthermore, many family caregivers felt the restrictions were unfair, inconsistent, and did not fit their circumstances, leading some to disregard the recommendations:

“We choose to be close in his last phase of life, also physically, because that is what my father-in-law needs.” (Twitter)

Several family caregivers were astounded that, for example, booking a flight was possible, yet visiting their loved one was not. Meanwhile, multiple healthcare professionals, some even without personal protective equipment, went to see patients:

“Can someone explain to me why I, a daughter visiting her father, pose a greater threat than nurse aides and volunteers?” (Twitter)

Through discussion on the online media platforms, it became clear that restrictions differed between healthcare institutions, adding to the conviction that the restrictions were unfair. Many family caregivers directly addressed the government, the media or healthcare organisations, hoping to activate a new course of action:

“I want to see my mother, it is truly disgraceful that I can’t be close to her!! HUGO [Minister of Healthcare] are you listening?? I don’t want to wait another week! I don’t care how you fix it, but I want to see her NOW!” (Twitter)

Family caregivers were also frustrated as they experienced a lack of acknowledgement of their important role in the care for their loved one. They argued that by excluding family caregivers, patients did not receive optimal care. Some family caregivers were even convinced that their loved one would not have died if they would have been able to visit and look after them:

“I am too tired to fight any longer, but please let the nursing homes provide more customized solutions. Then my wife would still be alive.” (Twitter)

Indignation and anger were also addressed to people ignoring the lockdown recommendations, as those people indirectly put their loved one at danger and contributed to the upholding of restrictions:

“I haven’t seen my terminally ill father for weeks and meanwhile the whole of the Netherlands goes to the beach, [swear word] I hate the Dutch.” (Twitter)

As demonstrated in this theme, family caregivers were struck with disbelief regarding the new circumstances as those conflicted with what they believed to be fair and just. Some expressed more positive views, as reflected in the final theme.

4) Understanding, acceptance and gratitude.

Family caregivers not only expressed the resistance portrayed in the preceding theme. Some family caregivers considered the restrictions to be understandable, despite their consequences:

“Her only remaining sister was not allowed to see her after she died. That was very tough. But I do understand. Limit the threat as much as possible for everyone.” (Twitter)

Family caregivers found different ways that helped them to cope with these consequences. One family caregiver shared how she drew support from a higher power. Others described being supported by loved ones or healthcare professionals. Some family caregivers could find comfort in noticing that the patient did not suffer greatly from the restrictions as they did not fully understand what was going on due to their cognitive deterioration. Family caregivers described how they managed to make the most of their last time together, despite the restrictions.

“On the first of May we got married and, despite Covid, we truly had a wonderful day. My husband said that he forgot he was ill and we really enjoyed the day.” (Forum)

Some were capable to see positive aspects of the restrictions:

“When my mother died, everyone had to say goodbye individually. In hindsight, this was invaluable, compared to saying goodbye collectively. That’s the other side of the coin.” (Twitter)

“Lockdown gives me peace and space for my grief and sadness, without all kinds of distractions. Being in this bubble with my children feels good, as crazy as that sounds.” (Twitter)

Last, multiple family caregivers expressed gratitude towards healthcare professionals for their hard work during the pandemic and their efforts to facilitate contact and to accommodate their wishes despite the restrictions:

“Thank you to all nurse aides who are now giving extra attention to our parents on our behalf.” (Twitter)

“I am very happy how healthcare professionals try to find solutions. We can pick up my mother outside the nursing home so that she can visit my father in the hospice. It’s so important now and not something you can make up for later! #grateful.” (Twitter)

In summary, some family caregivers maintained a more positive attitude under the circumstances, some even mentioning silver linings to the restrictions.