The findings are presented first with data about the participants, and then an overview of the support needs and support actions in the HSCT context. Thereafter, FC and designated nurses’ experiences of the CSNAT-I is presented in four categories: the CSNAT-I was relevant and became an eye opener; nurses’ experiences were of importance to enable trustful CSNAT-I conversations; the CSNAT-I provided FC with support and a sense of security; and the CSNAT-I gave FC insight, preparedness and enabled change. Quotations are presented to illustrate the family caregivers’ and nurses’ experiences in their own words. Out of 50 eligible patients planned for HSCT, 45 underwent transplantation, four were postponed and one died before transplantation. Among those 45 patients, six had no FC who understood Swedish, two did not allow us to invite their FC to participate, one had no FC, in one case the pre-transplantation process was too quick to enable us to ask her/him to participate and in another it was not possible to ask the patient for permission due to cognitive deficits. Thus, 34 FC were eligible for inclusion and informed about the study, of whom four declined participation and 30 accepted (88%). Of the 30 FC who accepted, three only participated in conversation 1, which resulted in a total of 27 (80%) FC, 19 from Stockholm and 8 from Lund. All conversations were conducted over the phone, except for one by video. Conversation 1 took 45–60 min and conversation 2 13–30 min. The median age of the participants was 55 years and 56% were women. Other characteristics are presented in Table 1.
Support needs and support actions in the HSCT context
The number of support needs reported by FC in the CSNAT tool at conversation 1 varied widely: zero (n = 4), one (n = 6), two (n = 4), four (n = 4), five (n = 2) and more than six (n = 7). The most frequent support needs being present in the CSNAT tool were knowing what to expect in the future; dealing with your feelings and worries; knowing who to contact; and talking with your relative about their illness. In Fig. 2, the “Yes” is a sum of the response alternatives selected as “a little more” and “quite a bit more”. A support plan was set up in 78% (21 out of 27) of the first conversations, while in 22% (6 out of 27) there was no need for further action (Table 2). The actions concerned advice about how to seek psychological support (n = 14) or medical treatment for themselves (n = 2), medical information about the patient from a physician (n = 9) or patient organisation (n = 4), or how to arrange home care (n = 4).
FC and designated nurses’ experiences of the CSNAT-I
The CSNAT-I was relevant and became an eye opener
Both FC and designated nurses described that using the CSNAT tool provided a structure, which facilitated a good conversation. The designated nurses experienced that the FC were well prepared and believed it had worked well both when FC had completed the tool before the conversation or together with them during the conversation. Many FC highlighted that going through all domains provided them with a new insight into what support they might need throughout the HSCT-process, which was described as “a kind of eye opener” and as a recognition of what might arise in the future.
The domains in the tool were relevant, although some FC, especially those not living with the patient, stated that the domains “Getting a break from caring overnight” and “Practical help in the home” were not relevant. This was also supported by the nurses. Some of the FC commented that the domain “Beliefs or spiritual concerns” felt odd. Only a few of the FC felt the domains were not relevant and some FC appreciated an explanatory description of the domains in relation to the HSCT-process. The FC who found the domains not relevant were mostly FC who were not the partner of the patient or not living together with the patient.
Most of the FC experienced the conversations as “timely” which was confirmed by the nurses. Most FC mentioned that they were content with one follow-up conversation, but a few FC would have appreciated an additional follow-up conversation, which the nurses also identified in a few cases. The nurses reflected on the fact that the content of the conversations had a different focus, i.e. the first conversation often had a focus on “Understanding the illness”, “Expectations for the future” and “Knowing who to contact”. In the second conversation, the support needs identified during the first conversation were followed up and the focus was on dealing with practicalities, such as coping with various restrictions. The nurses experienced that the FC took the lead in the second conversation.
“Good to start from the domain and take them one at a time, very important because then I started to understand what it was all about with everything around us. We had received a lot of information from the doctors and nurses before and therefore I did not think I needed this, but these conversations filled another need.” (Husband, 56 years).
Nurses’ experiences were of importance to enable trustful CSNAT-I conversations
All FC identified several factors of importance for creating trust in the nurses, i.e. the nurses’ high level of competence and extensive experience of HSCT, their ability to have these conversations, as well as their professional and personal qualities. The nurses were described as being easy to talk to and being professional yet personal. The designated nurses also highlighted the fact that their experience and knowledge of HSCT-nursing made them comfortable and confident to have these conversations. They emphasised the need to have a genuine interest in listening. They expressed that an active listening approach had developed from their knowledge, experience and conscious choice of a humble attitude towards the life situation of FC.
Both FC and designated nurses reported that conducting the conversations over the phone was positive, worked well and enabled them to build a trustful relationship despite being unable to see each other. Several FC mentioned the advantage of not having to go to the hospital. However, those who had difficulties with the Swedish language would have preferred face-to-face conversations and several FC expressed a wish for video-based conversations. The designated nurses reported a disadvantage of being unable to read body language or interpret reactions and emotions during the conversations. This was especially problematic when a FC cried or shared something sensitive, as it was impossible to show care and provide comfort through their own body language.
“You need to have experience, have worked with patients and know about treatments, how the patient will feel in the future, follow-up etc. Answering the CSNAT tool will give them a sense of security…, used to talking to people, listening, maybe not coming up with solutions so quickly, but asking what do you think, what do you want to do?” (Designated nurse).
The CSNAT-I provided FC with support and a sense of security
All the FC expressed and appreciated that the conversations had focused on their life situation and needs. The conversations were about how the FC was doing, her/his thoughts and worries. Many of the FC expressed that they had initially believed that they did not need support, but that during the conversations it became obvious that they felt worse than they had thought. They experienced that the conversations were supportive and derived great benefit from them. The FC expressed that the conversations fulfilled another function compared to the information from doctors, i.e. focus on them as individuals. The FC felt relieved and more at peace after the conversations. For many, this was the first time that focus was exclusively on their life situation and needs, which they expressed as valuable and a good feeling, adding that they appreciated being listened to. The conversations gave them opportunities to ask questions, receive information and reflect and discuss situations in life, with a focus on their needs as a FC, while the patient was not present. The support from the nurses during the conversations also included practical aspects and advice, such as information about support available for FC, for example sick leave, and what to think about during the rehabilitation when the patient returned home. However, some of the FC expressed that they had no need for these conversations. Nevertheless, both designated nurses felt that most of the FC were satisfied after the conversations. Even the FC who did not have any support needs expressed that the conversations per se had been rewarding.
“Very valuable to talk to and get support from someone with expertise in illness and treatments, without medical focus, and with warmth with a focus on me as a relative.” (Wife, 66 years).
The CSNAT-I gave FC insight, preparedness and enabled change
When the FC recalled the CSNAT-I during the exit-interviews, they realised that they had gained new insights. They had learned about how they were actually feeling and what support they needed, e.g. the need to take care of oneself and ask for help. They had also gained new knowledge about the transplantation process and the patient’s situation, which led to reduced or more balanced worries about things that might happen later. The intervention also made it possible for them to focus on non-medical aspects, such as how to relate to the situation and that they as FC are important for the patient. They described feeling more prepared for the transplantation process with a sense of participating in the patient’s care. The feeling of preparedness mainly concerned being mentally prepared. For some, the CSNAT-I had led to a personal change in their life situation, and they understood that they needed help. These changes involved dealing with grief, contacting a social worker for psychological support and prioritizing their own needs, such as time for themselves, physical exercise and sufficient sleep during the night. However, a few did not make any changes after the conversations, despite the fact that most appreciated the conversations focusing on them as FC.
“I got an insight into what I needed. I need and it’s okay that I’m sad and grieving and that I need support, I also gained insight into how I can be an even better support for him. It is important that I understand that I have to take care of myself as well because it then helps him. I did not realize that until then, you cannot just move on forward. It was the big win to get this win. Plus, how I handle, got better at handling my grief.” (Friend, male, 59 years).