Characteristics of participants and participation

Of 36 ICs registered for the intervention, five dropped out before baseline. In one case, the patient died before the IC started the intervention; in a further four cases, the reasons for dropout remain unknown, as the ICs could not be contacted despite several attempts. The remaining 31 ICs completed the baseline questionnaire and were included in the intervention, with 25 ICs returning the follow-up questionnaire. Therefore, six ICs were lost to follow-up for reasons unknown. Afterwards, 20 of the 31 ICs were interviewed (duration in min.: M=31.8, SD=12.1, 15-62). The mean age of participating ICs (N=31) was 51.4 years and 90% (n=28) of ICs were female. In most cases, the person they cared for was living at home (n=25, 81%), was their spouse (n=20, 65%) and had an underlying cancer disease (n=21, 68%; Table 3).

Table 3 ICs and patient-related characteristics at baseline (N=31)

Table 4 summarizes the characteristics of participation. Of 31 ICs, 14 (45%) completed the intervention (=at least 5/6 modules). However, this is more a description of the use of the intervention than a quality indicator, as ICs were able to select modules according to their needs. The average number of attended modules was 3.6 out of 6 (SD=2.0, range 1-6). Due to the pandemic, 19 (61%) of the ICs participated web-based. The average duration of participation was 15.5 weeks (SD=4.5, range 1-27). In relative terms, module 2 (Getting prepared: Information about social and legal issues) and module 5 (Strategies for handling changes in the disease progression) were attended most commonly, by 21 ICs (68%) each.

Table 4 Characteristics of participation (N=31)Triangulated results of the evaluation

In the following, triangulated results are reported. The triangulation showed that in some parts qualitative analysis gave results in greater detail, in other parts quantitative analysis was more informative and sometimes both parts were complementary. Qualitative findings are displayed in Fig. 2. In supplement file 4, the detailed category system is provided and explanations and illustrative quotes for each subcategory have been added. Quantitative data are summarized in Tables 5, 6 and 7, data on module level in Supplement File 5. Tables and figures are shown where the corresponding results are reported.

Fig. 2

Category system of the qualitative evaluation. Abbreviations: ICs, informal caregivers; a dual role = being a person who supports and cares for the ill person at the same time as being a person with own needs

Table 5 Satisfaction with the implementation of the interventionTable 6 ICs benefits of participatingTable 7 Supporting factors for practical implementation of the learned skills into daily lifeIntention of participating

In the qualitative data, ICs reported expectations and motivations for participating in the intervention (Fig. 2). One motivational factor was the explicit focus of the intervention on ICs, as their role as ICs, associated burden and needs are often overlooked:

“Everyone naturally cares about the ill person and asks about him, how he is going, but no one asks about how I am.” (IC 04)

ICs also expected to receive information about specific topics, e.g. care issues, legal aspects and support services. They believed that an increased knowledge on these topics could help them being more prepared and confident. For example, one IC wanted to acquire information about what she might face in future:

„Information, gaining knowledge (...) I just wanted to know: what to expect and who to ask if I don't know what to do.” (IC 24)

Likewise, ICs expected to learn how to deal with potentially burdensome topics (e.g. grief), own emotions and fears, as well as finding a better way of understanding and dealing with the ill person. They hoped to strengthen their resources by improving self-care and self-efficacy. Furthermore, ICs participated in the intervention to get in contact with others concerned, to share experiences and feel less isolated.

Satisfaction with the implementation of the intervention

The evaluation of the heiQ-program showed medium to high satisfaction with the implementation of the intervention (Table 5). Overall, 8 of the 9 original heiQ-program items were rated as “agree” by at least 76% of ICs. Satisfaction was particularly visible for module 1 (Hands-on care: tips and strategies for providing care at home), for detailed data see Supplement file 5. At follow-up, all ICs (n=25, 100%) reported that they have trusted the given information and felt that the subject matter provided was clear and easy to understand. Interview data refined that ICs trusted the given information as they had trust in the institution delivering the intervention:

„A program at an institution that I consider trustworthy, namely a university hospital (...), and I have the opportunity to inform myself about the broad spectrum of issues, that's a great chance for me.” (IC 24)

On average, ICs rated the whole intervention as very helpful (M=8.2, SD=1.6, range: 3-10 on a scale of 1 “not helpful at all” – 10 “extremely helpful”; data not shown). Overall, 92% (n=23) would recommend the intervention to other ICs.

ICs described feeling encouraged by the palliative care experts delivering the intervention, as besides receiving new information, they felt validated in their prior knowledge and experiences. They also reported gaining confidence over the course of the intervention, through the way the course was implemented and the way the experts act.

“At the beginning I was skeptical, maybe a little bit afraid, because of the emotional issues, but in the course it was okay, I felt really well taken care of.” (IC11)

Subjective benefits of the interventionChanges on cognitive, emotional and behavioural level

Qualitative data revealed that subjective benefits of the intervention can be described on three levels: cognitive, emotional and behavioural.

On the cognitive level, beneficial changes due to the intervention included increase in knowledge, self-reflection and self-awareness:

„Due to the intervention, I realised that I should take care of myself more often.“ (IC 04)

On the emotional level, beneficial changes included a sense of encouragement (e.g. to start therapy), strength, gratitude, feeling less guilty (e.g. when doing self-care activities), and better acceptance of one’s own emotionality:

„(…) to gain the feeling that it is okay to feel a certain way and also to accept oneself with one's own fears and worries.“ (IC 33)

Further, the intervention had led to goal directed behaviour and concrete actions in ICs everyday life. For instance, including more self-care into daily life, significant changes in dealing with the ill person and use of support services (e.g. psychotherapist, palliative care specialist):

„We immediately looked for a local palliative care physician, here where we live (...) we go there every four weeks.“ (IC 24)

Topics of subjective benefits

Several perceived benefits of participating in the intervention could be identified in quantitative (Table 6) and qualitative data (Fig. 2). Quantitative results appeared similarly across all modules (for detailed data see Supplement File 6).

Gaining knowledge

Quantitative analysis demonstrated a subjective benefit of the intervention regarding the ICs knowing more about support services for ICs (n=18, 75%) and having more answers to important questions (n=17, 71%; Table 6). Qualitative data support these findings, as ICs reported that the intervention helped them through information about topics such as legal aspects, care issues, disease progression and medication, and support services. Thus, ICs felt better prepared and relieved:

„I learned (...) who I can contact and also how it works when he dies, who will take care of him and that the funeral home will do a lot. That was a real benefit for me.“ (IC 05)

Having more knowledge was also described as a good starting point for discussions with the ill person as well as with others concerned. Realising the principles and goals of palliative care led to relief and more acceptance of help, as one participant reported:

“I realized (…) that palliative care does not just start when the end of life is very near, but even before that (...) that was a very important realisation for me.“ (IC 28)

Self-awareness and -efficacy

Quantitative data showed that the intervention affected the ICs self-awareness and –efficacy (Table 5). Over half of the ICs reported on being more aware of their own needs (n=15, 65%) and feeling more confident in handling their own feelings (n=15, 63%). ICs also indicated to feel more confident interacting with the ill person (n=11, 48%) and to be better at knowing (n=9, 38%) and assessing (n=11, 46%) their own capacities. Qualitative data revealed insights into how self-awareness and self-efficacy were improved. For example, the intervention had helped ICs reflecting upon finitude of life and their role as an IC, and thus to accept the situation and accompanying emotions. ICs reported being more aware of their own needs and the importance of self-care:

„I learned (...) that I can work on myself (...). When I have a problem or fears I look at what does me good, (..) and that I do gymnastic exercises without having a bad conscience.“ (IC 18)

They felt recognized and valued in their unique burdens and needs as ICs:

„It was definitely very useful and valuable for me to know (...) that there are people who think about us, the ICs. That not only patients are in such a difficult situation, but also we, the ICs.“ (IC 31)

Furthermore, ICs reported positive changes in dealing with the ill person by feeling more confident in communicating feelings:

„What I remember best is dealing with my own fears, worries and needs, because that is what has burdened me most. (…) I gained more self-confidence in dialogue with my wife to talk about these things.” (IC 28)

Potential burden

Despite the sensitive topics of the intervention, in quantitative data, most of the ICs (n=19, 83%) reported no further emotional distress due to participating. Sharing experiences with other persons in similar situations was described as very helpful (e.g. sense of common):

„The feeling of not being alone (…), [to know] this happens to many people (…), that alone has helped me. (…) To release a little pressure (...) to see that other people are not doing well either when they see their loved ones will die.” (IC 16)

Subjective burden of informal caregiving

Though most ICs reported subjective benefits, there was no significant change in the ICs burden as measured by the BSFC-s (t(21)=-1.65, p=.115, N=22; data not shown). At baseline, ICs on average showed a high burden of caregiving (M=16.4, SD=6.8, range 4-30). Three months later, the mean score dropped to a medium degree of burden (M=14.1, SD=7.4, range 4-29).

Implementing the learned skills into daily lifeSupporting factors

The most supporting factors (Table 7) for implementation to daily life were the ICs themselves and their motivation (n=23, 92%), other affected persons (n=12, 48%), information from TV, books or brochures (n=11, 46%), physicians or other healthcare professionals and the ill person (n=10, 42%). Thus, the ill person can be a hindering and supporting factor, which is also seen in the interviews. For example, one IC described improvements in her mother’s health as helpful for application of the newly acquired knowledge:

„(…) my mother is getting fitter, which makes everything that I've learned a bit easier. Bit by bit, the overload (...) becomes less, which gives room for (...) for example self-care, making the implementation of the learned (...) easier.“ (IC 07)

In addition to the quantitative data, qualitative data revealed intervention-related factors to support implementation to daily life. Practical contents with specific tips and tutorials as well as additionally provided materials and recommendations were reported as particularly helpful, as one IC stated:

„The contents were simply so practical, from my point of view it was immediately usable.“ (IC 34)

Hindering factors

At 3-months follow-up, internal and external factors were identified that hindered ICs implementing what they have learned into daily life (Table 8). Most ICs (n=15, 60%) stated “lack of time, stress” as a barrier, followed by their impaired own well-being (n=13, 54%), their job (n=13, 52%) and the ill person (n=10, 42%). These factors aligned with those reported in the interviews, with qualitative data illuminating the underlying mechanisms. For example, one IC described facing resistance as she wanted to talk to her partner about the power of attorney and the living will:

„It couldn’t work out to start a conversation with my husband. (...) He always gives me the answer: I don't want to think about it.” (IC 18)

Table 8 Hindering factors for practical implementation of the learned skills into daily life

Moreover, ICs named their own habits and lack of motivation as hindering factors, both in quantitative (n=10, 40%; n=3, 12%) and qualitative data:

„My own laziness, my own weaker self, and that I still don't have a living will although I was completely enthusiastic about it.“ (IC 02)

Challenges of participating

Qualitative data revealed relevant challenges of participating in the intervention (Fig. 2). There were structural challenges like technical problems and lack of time, due to work, childcare or taking care of the ill person, as this quote illustrates:

„ I worked in a full-time job, was in the hospital every day, and (...) took care of his cat. The time pressure (...) made it difficult for me.“ (IC 05)

Further, ICs described the group heterogeneity as demanding as they are facing different issues and questions due to various ages, relationships to the ill person and therefore different times in their life in general (e.g. newly married). Thereof, diverging needs and burdens could be derived. For instance, in one session most participants were older and looked back on a long-lasting relationship with the ill person. One younger IC reported facing different issues than the other participants, because of her specific stage of life:

„We were faced with questions about starting a family and how to go on with life planning, and the older women, (…) the nature of accompaniment is different, after you've spent your whole life together.” (IC 33)

Despite this challenge, the IC was still able to identify herself with the other participants in other aspects:

“There were definitely individual comments from the other participants that made me think: yes, that's exactly how I've felt too.” (IC 33)

Before starting the intervention, ICs recognized emotional challenges stemming from their uncertainty how they would deal with particular topics, from questioning their ability to seek and accept help, and from concerns about emotions possibly evoked by the intervention. As one IC narrated:

„For me it was a challenge to go there, because all this is very emotional and I knew I would most likely cry a lot.“ (IC 11)

Despite such concerns, most of the ICs (n=19, 83%; Table 5) reported no further emotional distress after participating in the intervention.

Potential for improvement

In the interviews, ICs were asked on how the intervention could be improved. While some ICs perceived the contents and the information density of the individual modules as sufficient, others requested adjustments, as illustrated by the following quotes:

„What I missed a bit (...) [is the topic] how the ill person behaves and how I deal with it.“ (IC 18)

„Sometimes [it was] too much content for too little time.” (IC 07)

ICs heterogeneous needs also became apparent regarding the exchange among the participants. Some desired more opportunity for sharing experiences, for instance by closed group meetings and greater groups, as one participant stated:

„Personally, I think it would be (...) good to have a closed group, to get to know each other and to learn more from the others, and thereby benefit.“ (IC 22)

At the same time, others appreciated the focus of the intervention on providing information and transferring of knowledge, as they explicitly did not seek for a support group.

Other named potentials for improvement were having more opportunities to ask questions and getting more practical tips, like checklists or exercises. Furthermore, ICs suggestions for improvement referred to the timeframe: different time of day, different day of the week or rhythm (e.g. every 2 weeks).

Regarding getting information about support services like this intervention, ICs wished to be informed by the professional caregivers:

„I would have liked a nurse or a physician to talk to me personally about this [the intervention], so that you could feel (...) individually addressed.“ (IC 21)

Apart from the indications for possible improvements, other ICs stated to see no potential improvement:

"I really don't know what could be improved." (IC 11)

Moreover, ICs showed appreciation and gratefulness for the intervention and experienced the acquired knowledge as lasting:

"What I find wonderful is that it is so sustainable. It is not as if you participated (...) and forgot about it, I still benefit from it. (...) It [the intervention] has really been like a gift for me." (IC 32)